Citation
Growing pains : young adults' experiences living with inflammatory bowel disease

Material Information

Title:
Growing pains : young adults' experiences living with inflammatory bowel disease
Creator:
Benn, Beth E.
Place of Publication:
Denver, CO
Publisher:
University of Colorado Denver
Publication Date:
Language:
English

Thesis/Dissertation Information

Degree:
Master's ( Master of arts)
Degree Grantor:
University of Colorado Denver
Degree Divisions:
Department of Sociology, CU Denver
Degree Disciplines:
Sociology
Committee Chair:
Reich, Jennifer A.
Committee Members:
Bosick, Stacey J.
Guzik, Keith W.

Notes

Abstract:
Chronic illnesses influence, and sometimes, dominate the lives of affected individuals. Although prior research shows how illness affects individuals’ interactions with various social institutions as well as interpersonal relationships, mental health, and identity, fewer studies have contextualized chronic illness as part of the life course, especially concerning the intersection of chronic illness and emerging adulthood. Drawing on 20 in-depth interviews with young adults with Inflammatory Bowel Disease (IBD), including Ulcerative Colitis and Crohns Disease, this study examines how those with onset of IBD between the ages of 18 and 30 years manage this invisible chronic illness in the context of emerging adulthood. Specifically, this study considers the experiences of symptoms, diagnosis, and treatment, and how living with a chronic disease impacts identity, opportunities, and interpersonal relationships in young adulthood. I find that IBD is incompatible with normative expectations of young adulthood, as many social institutions are unsuited to accommodate the needs of chronically ill young adults. Ultimately, institutions and cultural structures limit agency and opportunities for young adults living with IBD.

Record Information

Source Institution:
University of Colorado Denver
Holding Location:
Auraria Library
Rights Management:
Copyright Beth E. Benn. Permission granted to University of Colorado Denver to digitize and display this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.

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Full Text
GROWING PAINS: YOUNG ADULTS’ EXPERIENCES LIVING WITH INFLAMMATORY
BOWEL DISEASE by
BETH E. BENN
B.A., University of Northern Colorado, 2016
A thesis submitted to the Faculty of the Graduate School of the University of Colorado in partial fulfillment of the requirements for the degree of Master of Arts Sociology Program
2019


This thesis for the Master of Arts Degree by Beth E. Benn has been approved for the Sociology Program by
Jennifer A. Reich, Chair Stacey J. Bosick
Keith W. Guzik


Benn, Beth E. (M. A., Sociology Program)
Growing Pains: Young Adults’ Experiences Living with Inflammatory Bowel Disease Thesis directed by Professor Jennifer A. Reich
ABSTRACT
Chronic illnesses influence, and sometimes, dominate the lives of affected individuals. Although prior research shows how illness affects individuals’ interactions with various social institutions as well as interpersonal relationships, mental health, and identity, fewer studies have contextualized chronic illness as part of the life course, especially concerning the intersection of chronic illness and emerging adulthood. Drawing on 20 in-depth interviews with young adults with Inflammatory Bowel Disease (IBD), including Ulcerative Colitis and Crohns Disease, this study examines how those with onset of IBD between the ages of 18 and 30 years manage this invisible chronic illness in the context of emerging adulthood. Specifically, this study considers the experiences of symptoms, diagnosis, and treatment, and how living with a chronic disease impacts identity, opportunities, and interpersonal relationships in young adulthood. I find that IBD is incompatible with normative expectations of young adulthood, as many social institutions are unsuited to accommodate the needs of chronically ill young adults. Ultimately, institutions and cultural structures limit agency and opportunities for young adults living with IBD.
The form and content of this abstract are approved. I recommend its publication.
Approved: Jennifer A. Reich


For Dan and Clay Conway. I love you.


TABLE OF CONTENTS
CHAPTER
I. INTRODUCTION.........................................................1
Chronic Illness and Emerging Adulthood...............................4
Methodology..........................................................9
II. SCHOOL OF HARD KNOCKS: CHALLENGES IN
EDUCATIONAL INSTITUTIONS............................................13
Missing Out and Stress Out..........................................13
An Unexpected Road..................................................17
Challenges in College Dormitories...................................19
Extracurricular Activities and Socialization........................22
III. NOT ON OUR TIME:
NEGOTATING CHRONIC ILLNESS IN THE WORKPLACE.........................28
Being the New Kid...................................................28
Disclosure..........................................................32
Unsupportive Colleagues.............................................35
Professional Presentation versus Urgency............................38
IV. TRYING TO FIND A BALANCE:
REDEFINING FAMILY AND RELATIONSHIPS.................................41
I can do it and I need help.........................................41
Relationships with a Catch..........................................47
Redefining Family and Confined Choices .............................54
v


V. IT’S A BUSINESS, NOT A SERVICE: HOW PRIVATIZED CARE SHAPES
OPPORTUNITIES AND IDENTITY........................................58
Drugs, Sex, and IBD...............................................58
Is it Covered?....................................................60
The Cost of Being Young...........................................64
Confined Benefits.................................................67
VI. CONCLUSION: WHERE WE ARE AND WHERE WE CAN GO......................72
Summarizing the Data..................................................72
Discussing the Covert.................................................75
What We Can Learn and Where We Should Go..............................77
Limitations and Future Research.......................................79
REFERENCES............................................................80
APPENDIX..............................................................87
VI


CHAPTER ONE
INTRODUCTION
I got into an argument with my chemistry teacher in high school. I was like, ‘I have to go to the bathroom,’ and she’s like, “you walk out at the same time every day, this is bullshit. This is a lie.” And I was just like, “no I’m going to the bathroom.” And she was like, “if you leave, you’re never allowed back here.” And I just grabbed the trashcan, like, right there and I was like “I will go in that trashcan right fucking here if you don’t let me do it.” -Adam
Inflammatory Bowel Disease (IBD) lives under the skin and in the gut, making symptoms apparent to the body of the sufferer while remaining imperceptible to the social world. Adam’s experience in chemistry class illustrates the tension between these oppositional observations.
Like many young people, 17-year-old Adam was unaware he was suffering from a chronic condition called Inflammatory Bowel Disease. For months, he experienced common symptoms of IBD, including urgent and frequent bowel movements, loose and watery stools, diarrhea, rectal bleeding, reduced appetite, weight loss, fatigue, and abdominal pain (Bamed et al. 2016). When these symptoms overwhelmed Adam in a public setting and his chemistry teacher dismissed his accounts of his pain, he was forced to advocate for himself and consequently was subjected to public embarrassment. Internal and socially private symptoms traveled from relative invisibility, before only acknowledged by Adam, to a public place of exposure. Adam’s experience demonstrates how chronic illness exists between the public and private. The social consequences of this disease are often structured by larger institutions and impact affected individual’s emotional and social lives.
Inflammatory Bowel Disease, including Ulcerative Colitis (UC) and Crohn’s Disease (CD), invades the lives of approximately 1.6 million Americans (Crohns and Colitis Foundation of America—CCFA). IBD is characterized by chronic, incurable, and relapsing inflammation of the intestinal system. CD impacts any area of the gastrointestinal tract and UC affects the large
1


intestine, which experiences continuous inflammation (Trindade, Ferreria, and Pinto-Goveia 2015). While CD and UC are distinct illnesses, symptoms manifest in similar ways (Saunders 2014). Symptoms typically include urgent and frequent diarrhea, bloody and mucous-based stools, and severe abdominal pain (CCFA). Individuals may experience 10 to 30 bowel movements a day and some experience incontinence as a result of the urgent nature of symptoms (CCFA). Like most chronic illnesses, affected individuals experience unexpected onset of symptoms called flare ups and periods of decreased symptom activity called remission. Flare ups can last days, weeks, or even months and remission might last for months or years, with considerable variation between individuals (CCFA). Like Adam, over half of new diagnoses are between the ages of 15 and 30, a time frame that is not typically associated with chronic illness (Duricova et al. 2014).
Usually, discussions of chronic illness disproportionately focus on older populations whose lives are less transitional than younger adults. Older populations are more likely to have achieved the five main rites of passage to adulthood including, moving out of the home of origin, attaining education, securing employment, getting married, and creating family (Arnett 1997). In many ways, having housing, independence, relationships that might provide social support, and secure employment make managing chronic illness easier for more financially and relationally established older adults. In contrast, young adulthood is marked by turbulent life transitions, a time period that is critical to the construction of intimate relationships, sexual self-discovery, career path development, family formation, and ultimately, identity (Fussell and Furstenberg 2005).
Culturally, young adults are assumed to be physically and sexually active, happy, healthy, and working toward achieving education, employment, and financial independence (Fussell and
2


Furstenberg 2005). These expectations are ubiquitous in representations of young adulthood. Dominant American institutions, including family, healthcare, work, and education operate with the presumptions that individuals will be independent. A few examples underscore this: historically there is a cultural expectation that young adults move out of the home of origin around the age of 18 years old (Osgood et al. 2005); the U.S healthcare system requires young adults secure health insurance independent than that of their parents by age 26 (American Affordable Care Act—ACA 2010); the legal working age is 14 years old with most young adults acquiring full time or part time employment between the ages of 18 and 30 years (Bureau of Labor Statistics 2018); the majority of American universities encourage, and sometimes require, young adults to move out of the home of origin and into on-campus dormitories.
Expectations of successful transitions from dependent youth to independent adulthood are pervasive, but do not represent the experiences of young adults in vulnerable populations (Osgood et al. 2005). Accordingly, these expectations may not represent those living with chronic illness during emerging adulthood. The very consequences of chronic illness present unique physical, social, and financial burdens, making expectations for educational attainment, employment, family formation, and financial independence more challenging for those affected (Osgood et al. 2005). In short, symptoms of IBD and the consequence of living with a chronic illness are incompatible with conventional expectations and opportunities in young adulthood.
Very few studies have evaluated the intersection of chronic illness and young adulthood, effectively divorcing chronic illness from the important context of emerging adulthood. The paucity of this research deprives young adults of public recognition and representation, making progress, policy changes, or resources for this population less likely. Generally, dominant
3


American institutions fail to represent chronically ill young adults, making part of their identity fall outside of societal norms.
IBD’s unique age of onset, where approximately half of new diagnoses are to people under 30 years, invites further investigation on the lived experiences of young adults with chronic illness (Duricova et al. 2014). A sociological perspective offers a contextualized and nuanced examination of this disease; accordingly, young adults affected by IBD will be evaluated based on the institutions they interact with and are embedded within. This research considers the experience of symptoms, diagnosis, and treatment and how living with a chronic disease impacts identity, opportunities, and interpersonal relationships in young adulthood. Chronic Illness and Emerging Adulthood
Sociologists have evaluated illness and its interaction with various social institutions (Parsons 1951; Strauss 1998; Bury 1991), interpersonal relationships (Charmaz 1983; Bury 1982), and identity (Charmaz 1983; Goffman 1963). Most well-known and perhaps foundational to medical sociology is Parson’s sick role theory in which illness is conceptualized as deviant (Varul 2010). In this vein, sickness interferes with one’s obligation to institutions that structure everyday lives including the family and the workplace, causing sick individuals to deviate from their expected role performances. However, Parsons (1951) describes this deviance as positively sanctioned or approved by the community or authority figures. Here, he describes sickness as a legitimate reason for deviation. At the same time, Parsons underscores the responsibility of sick people in which society demands sick individuals get well quickly by seeking technically competent support through healthcare institutions (Williams, Calnan, and Gabe 2000). Parsons’ theory does not accommodate for those who are chronically ill and do not have the ability to get well quickly. Additionally, treatment for chronic illnesses do not offer absolute health
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restoration, making these expectations incompatible with chronic illness and sometimes impossible for the chronically ill to achieve.
Chronic illness scholarship has focused on the social implications of chronicity emphasizing biographical disruption. Bury (1983) suggests three aspects of disruption (1) taken-for-granted assumption and behaviors by which the onset of symptoms forces awareness of the body and often results in bodily alienation and betrayal, (2) explanatory frameworks whereby sick individuals question their biographical fate and reconstruct narratives of illness, and (3) mobilization of resources in which the chronically ill attempt to accrue cultural, financial, and medical resources, all of which are dependent on positionality and context (Williams et al.
2000).
Oftentimes, these biographic disruptions impact one’s role performances, and subsequently, one’s identity and esteem. When sick people slip into illness routines, they fail to meet the demands of capitalistic economies, the family, and the social world more generally. As illness progressively absorbs time and resources, individuals become socially isolated, leading to loneliness (Charmaz 1997). Social isolation combined with the failure to achieve normative role performances adds up to a loss of esteem and identity (Varul 2010). Charmaz (1983) recognizes living restricted lives, experiencing social isolation, being discredited, and burdening others as influencing this loss of self. She explains the chronically ill experience “a crumbling away of their former self-images without simultaneous development of equally valued ones” (Charmaz 1983; Pp. 171). Discourse surrounding chronic illness is inextricably linked with stigma, as chronic illness threatens to contaminate individual’s identities as weak, unproductive, and less than whole persons. As a result, chronically ill people employ multiple strategies to disclose illness and manage stigma. Strategies include avoiding disclosure entirely, disclosing only when
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necessary, waiting to disclose until one feels close enough to recipients, and planning for disclosure with intention. Because of the stigmatizing nature of IBD, many of those affected manage disclosure by discussing their illness in vague terms (Thompson 2013).
Consistent with general chronic illness literature, individuals with IBD commonly experience reduced self-confidence, negative perceptions of body image, and an overall disbelief in self (Brydolf and Segesten 1996). The very nature of symptoms is often recognized as socially offensive and consequently prohibited from normative discourse. Accordingly, existing literature defines IBD symptoms as severely stigmatizing, reducing individual’s quality of life and contributing to increased levels of depression and anxiety (Drossman et al. 1989; Simren et al. 2002).
Very few studies of IBD contextualize these findings with literature on young adulthood. Even though the age of onset is between 15 and 30 years old, most research on IBD focus on middle-aged adults’ experiences, with the average age of samples nearing 40 years old (Simren 2002; Trindade et al. 2015; Drossman et al. 1989; Rubin et al. 2009). Studies that have focused on young adults’ experiences are primarily quantitative and have found that young adults with IBD feel particularly embarrassed by their disease and report lower quality of life than older adults (Rubin et al. 2009; Gavrilescu et al. 2005). However, these quantitative studies are unable to specify why, how, or the process by which young adults with IBD experience exceptional emotionality. Situating IBD as an event during a specific part of the life course, namely, the transition to adulthood helps to explain young adults’ outstanding unfavorable experiences and their process of sick role embodiment, biographic disruption, and the loss of self.
Young adulthood is often recognized as a time of great health, increased activity, good looks, and professional and personal development (Saunders 2014). Young adults are expected to be
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healthier than teens who are still developing and healthier than older adults who have accrued more physical conditions, marking young adulthood as a time of optimal health (Bonnie et al. 2014). As a consequence, young adults often participate in risky behavior and occupy various social statuses ranging anywhere from child to student to professional to parent. Empirically, young adulthood is the most turbulent time for shifting statuses, as most people in between the ages of 18 and 30 make the five major life transitions mentioned earlier (Fussell and Furstenberg 2005). However, IBD symptoms and treatment effects violate these expectations, as IBD decreases one’s living space and ability to socialize, induces fatigue, influences severe weight loss caused by symptoms and weight gain as an effect of treatment, and interferes with educational and employment trajectories (Brydolf and Segesten 1996; CCFA; Moody et al.
1992). These symptoms and the social consequences of them infringe on cultural expectations of health, risk taking, and transitioning social statuses in young adulthood.
Moreover, existing research of IBD and research on chronic illness more generally is not grounded in current historical, economic, political, or social contexts. It is important to evaluate the experiences of young adults’ with IBD within the current cultural context of growing selfhealth promotion, longer life expectancy, and higher rates of educational attainment than ever before (Fussell and Furstenberg 2005). Additionally, today’s young adults are disproportionately impacted by the effects of the 2008 recession, presenting unique challenges in securing employment, adjusting to adulthood, and establishing financial security, which has proven to be especially difficult for vulnerable populations (Milkman 2017).
It is also important to understand young adults’ experiences within the context of more dynamic and elongated processes that now mark the transition to adulthood. The process of transitioning to adulthood has become longer and less orderly in the last fifty years, making
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‘successful and complete’ transitions less clear (Shanahan 2000). Instead of sharp transitions, the transition to adulthood is now marked by semi-autonomy, with increased familial financial assistance and returns to the home of origin (Arnett 1997). Higher levels of education and later ages of marriage and reproduction also prove to lengthen this transition. However, very few studies discuss how young adults navigate their lives according to these cultural changes while managing chronic illness. A life course perspective offers culturally relevant perspectives when evaluating young adults’ with IBD’s experiences and their interactions with the various institutions these adult transitions often demand.
Some research suggests that disruptions in young adulthood can actually facilitate independence, responsibility, and competence (Bosick 2014). Charmaz (1997) explains chronic illness may at one time be considered devastating but later become a path to developing confidence, competence, and compassion. Though, existing literature mostly fails to communicate deep understandings of how less standardized transitions influence chronically ill young adult’s feelings and experiences in navigating the pathway to adulthood.
More research is needed to investigate the effects of chronic illness in young adulthood, with contextualization for the current historical time and place. This qualitative study is tailored to the lived experiences of young adults as they endure dual transitions that demand managing expectations of young adulthood and chronic illness. This study merges literature from life course on young adulthood and medical sociology of chronic illnesses. This thesis seeks to better understand the experiences of young adults with IBD and how they navigate the social world at the intersections of chronic illness and young adulthood.
Methodology
Sample
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The data for this study come from in-depth interviews with 20 young adults between 18 and 30 years old who, according to self-report, have a diagnosis of IBD including either Ulcerative Colitis or Crohn’s Disease. Individuals younger than 18 were excluded from the study to minimize risk and to remain consistent with the ages of emerging adulthood; however, participants who were diagnosed before the age of 18 discussed their experiences with IBD in prior years. I did not allow for people older than 30 years old to participate in this study to capture the ages consistent with emerging adulthood and young adulthood in existing literature.
With IBD affecting both men and women equally, ten men and ten women participated in this study. Of these men and women, ten reported a diagnosis of CD and ten reported a diagnosis of UC. All women identified as white and two men identified as mixed race, including Spanish and White and Mexican and White. The remaining eight identified as White. The racial make-up of these participants reflects the higher incidences of IBD among Caucasians (CCFA). All participants resided in urban settings in the United States, which is also consistent with higher incidences of diagnoses occurring in urban locations in northern climates (CCFA).
Age, insurance status, and educational background seemed to mark this sample as somewhat well-resourced. The average age of this sample was 25.2 years. All participants were insured through private health insurance companies. At the time of the interview, three participants held a high school diploma, three had some college (which often meant they were currently working on their bachelors), eleven earned a bachelor’s degree, five were currently in a graduate program, and three held a graduate degree. Seventeen participants identified as heterosexual, one male identified as homosexual, one female identified as bisexual, and another female was actively questioning her sexuality and did not define her sexual identity. At the time of data collection, five participants identified as single, 11 were in committed relationships, two
9


were married, and two were engaged. No participants described themselves as parents. A
descriptive table of participants is detailed below.
Name Disease Age Education Race
Adam UC 26 Some College White
Angela CD 23 Bachelors/some grad school White
Allie UC 22 Bachelors/some grad school White
Tate UC 25 Bachelors White
Derek UC 26 High School Diploma White
Vivian CD 24 Bachelors/some grad school White
James UC 30 Bachelors White
Kailyn CD 24 Juris Doctorate White
Eli CD 26 Bachelors White
Lindsey CD 27 Bachelors/some grad school White
Lyle CD 22 Some College White-Jewish
Maggie UC 26 Masters White
Max UC 30 PhD White
Mari ah CD 25 Bachelors White
Libby CD 18 Some College White
Rob UC 25 High School Diploma Mexican & White
Riley CD 28 Bachelors Spanish & White
Sierra UC 23 High School Diploma White
Simon CD 29 Bachelors/some grad school White
Lydia UC 24 Bachelors White
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It is important to discuss my positionality as qualitative research relies on those who conduct it (Charmaz 2006). My identity as a young, white, female reflects many participants’ identity in terms of age, race, and gender. I am also in a long term committed relationship with a young person with UC. My social position and intimate experiences observing the effects of this disease facilitated rapport and trust with participants.
Data Collection
Institutional Review Board approval was obtained prior to data collection to protect those who participated in this study. Convenience sampling was used to gain access to the individuals of interest using a variety of recruitment sites to increase a diverse and representative sample. Fliers were distributed at publicly-held support groups and at the center for gastroenterology at a medical research campus, however no participants used in this study were derived from these recruitment sites. Those who attended publicly-held support groups were often older than the targeted age group for this study. As a result, participants were recruited primarily by electronic advertisements posted on Reddit and Facebook as well as from personal networks and subsequent snowball sampling.
All participants, with the exception of three personal connections, initiated contact to arrange an interview after seeing information about the study. Ten interviews were conducted in person and ten were over the phone. Phone interviews were conducted with people living in a variety of states. For in-person interviews, the participants decided the location of the interview. All interviews took place in public settings like coffee shops or restaurants. With provided consent, every interview was recorded. Interview length varied, ranging from one hour to three hours and 14 minutes. The average interview lasted approximately an hour and a half.
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Interviews followed a semi-structured format, empowering participants to provide information and experiences not included in the interview guide. The interview guide changed following initial interviews and the emergence of unanticipated and significant themes. The interview guide was designed to elicit thoughtful and detailed responses, with questions about identity, symptoms, and treatment and the social consequences of these experiences. The interview guide can be found in the Appendix.
After interviews were transcribed verbatim, each transcript was read line by line to identify themes of interest (Esterberg 2002). I employed grounded theory from a constructivist perspective and worked inductively to gather quotes according to emergent themes (Charmaz 2006). This was an iterative process and as I proceeded, categories evolved through interpretation and became more theoretical as I engaged in successive levels of analysis (Charmaz 2006). Each informant was assigned a particular color to help contextualize individual stories while sifting through large quantities of data. Each participant was assigned a pseudonym to protect their confidentiality.
During analysis, it became apparent that social institutions, both formal and informal, structure the lived experiences of young adults with IBD. The following chapters are structured to examine the social institutions that emerged most often in interviews alongside the contextual factors that shape young adults’ experiences of IBD and transitions to adulthood. These institutions play a pivotal role in constructing identity and opportunities during the transition to adulthood.
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CHAPTER II
SCHOOL OF HARD KNOCKS: CHALLENGES IN EDUCATIONAL INSTITUIONS Overview
The majority of young adults in this study express concern surrounding bureaucratic processes and interpersonal interactions with educational institutions and those within it. This chapter illustrates the difficulties in navigating academic and social procedures while managing a chronic illness in young adulthood. Young adults’ perceptions of normative pathways to achieving cultural and educational standards often seem to be inflexible and consequentially incompatible with their identities, abilities, and experiences.
Missing out and Stressing Out Academic Stress and Increased Symptoms
It started during finals and it always did. So, freshmen year, spring: flare. Sophomore, fall finals: flare. That was usually when I got flares. It was dependent on my finals season and my doctor always says that this must have been stress induced. -Mariah
Secondary and post-secondary education demands considerable emotional, intellectual, and time investment of students. College students report increasing levels of stress with each academic year, with tests and other evaluation system frequently identified as the culprit (Pryor et al. 2010). Like the general population, students with IBD experience increased stress in these high-pressure conditions. However, the implications of stress wear on immunosuppressed bodies in distinctive ways. IBD flare ups can be and, oftentimes, are induced by stress, making navigating academic pressure particularly important to those whose health depends upon it.
Unfortunately, despite concerted efforts to alleviate stress, several participants like Mariah experienced flares in attempt to achieve academic success. Participants describe substantial time on studying as a necessary investment to achieve academic success and explain
13


how efforts to spend a disproportionate amount of their time devoted to academics effectively
interrupted healthy sleeping and eating habits. They understand these habits as inducing
consequential flare ups. Simon explains how his goals in school derailed his health:
you know it has been hard because stress is the biggest trigger, like, stress and lack of sleep are the two biggest triggers for my system, and you know, grad school sort of demands that of you. It’s like you know you’re gonna have 3 papers due this weekend and you need to get them done. And you know during finals week, it was like clockwork where you know that week I would have a flare up.
Simon explains that he could not mitigate symptoms through meditation or any other symptom management strategies. Instead he waited for the semester to end to see his symptoms decelerate. Several participants perceived the presence of symptoms as correlated, and sometimes, caused by academic anxiety. Most conceptualized flare ups as inevitable in these contexts and although they described individual mitigation strategies, most like Simon waited out the term.
This section illuminates the immense pressure students feel in college settings. One could attribute this anxiety to cultural or institutional emphasis on good grades. Often, good grades are described as a necessary prerequisite to employment, and more broadly, a successful life.
The Blunt Instrument of Bureaucratic Policies
Academic stress is not limited to examinations and course work. In addition to time spent studying, participants describe stress as arising from various forms of uncompromising academic and institutional policies, including financial burdens and attendance expectations. Participants often referenced how navigating bureaucratic institutions with chronic illness created new challenges to their efforts to succeed and stay healthy.
Academic institutions employ various systems to ensure student attendance. Participants described hall pass systems, sign in sheets, and pop quizzes as mechanisms to evaluate student attendance. These systems are designed to provide incentive for attending class, thus failure to
14


adhere to attendance policies can be detrimental to student’s grades. These expectations are
inherently incompatible with symptoms of IBD. Oftentimes, urgent and frequent bowel
movements confine those with IBD to restricted living spaces, disallowing class attendance or
for the full duration of class meetings. These attendance requirements police the bodies of
students and are especially detrimental to those whose bodies hinder them from attending class.
For some, symptoms demanded immediate departure from in-class settings. Several
participants describe numerous departures from a single class period. Most participants identified
high school teachers as particularly adherent to established school policies, requiring different
symptom management strategies. Libby explains of her experience in high school:
I’d wait to go to the bathroom until I got home because I didn’t feel comfortable in class. That’s the thing in high school, you only get a certain amount of bathroom passes and whatever, so I kinda used them all up and then I’d tell them I have crohns and I have to go when I want to.
Libby illustrates how systems like bathroom passes in high schools infringe on bodily autonomy and feelings of security, especially for those who are sick. This also communicates the power high school teachers, and perhaps regulations they are required to adhere to, have over student’s lives.
For other participants, symptoms prohibited regular class attendance. Riley was hospitalized during the finals exam period and missed every exam. The community college Riley attended required that he provide documentation of his hospital stay, even after his classmates presented professors with photographs of Riley in the hospital. Despite Riley’s willingness to share photographs of himself in a vulnerable position, his professors responded with what felt like an impersonal bureaucratic response that required Riley to perform additional labor in a time of already-compromised health. The detached nature of these responses makes Riley’s case
15


undistinguished from other absent students whose circumstances may vary considerably from Riley’s experiences. As such, bureaucratic processes are maintained by overlooking the personal, tangible, and specific circumstances of each student.
Several other participants described how absences resulted in the loss of social opportunities or academic recognition. For example, Adam, after missing three quarters of his junior year of high school due to a severe and ongoing UC flare, wanted to attend the prom as a way of feeling socially connected. When Adam attempted to attend the high school prom, the school initially denied him the opportunity because of his excessive number of absences. This institutional policy, designed to avoid truancies but inadequate to accommodate chronic illness, nearly operated to exclude Adam from participation in a cornerstone of adolescent American culture. The school’s immediate response seemed to be a product of established processes and rules, but failed to acknowledge the social and cultural deprivation Adam had already undergone as a sick and chronically absent student in high school.
Vivian, a self-described hard-working student who attended a private high school, was admitted to the hospital during junior year and missed several days. Although Vivian endured supplementary challenges as a chronically ill high school student, she maintained the highest GPA in her class. Instead of celebrating this exceptional accomplishment, the principal denied her the title of Valedictorian because of her attendance record. This response communicates that obedience to institutional policies was more important than the recognition of her academic acknowledgement. It also illustrates the ways institutional policies are inadequate for accommodating students with chronic illness.
Lack of accommodation can also prove financially costly. For example, Lyle attended an out-of-state four-year college in his dream location. A week after fall semester began, Lyle’s
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illness demanded attention. His doctor informed him that he would need to undergo surgery that required one week in the hospital, two weeks in bed, and minimal movement for four to six weeks after that. Lyle debated his ability to continue attending school and finally decided his health warranted his full attention. Lyle sought a tuition reimbursement after having only attended school for a single week, but following several negotiations, his institution only reimbursed 75% of his out-of-state tuition. Again, this response might have intended to be an objective and adequate rule for the vast majority of students, but did not seem to be fair for Lyle, whose situation could not have been anticipated. As a result, Lyle was forced to grapple with a life-changing surgery and the bureaucratic process of arguing for tuition reimbursement.
In these circumstances, students with IBD are deprived of security, cultural membership, and entitlements based on inflexible institutional guidelines. Perhaps most importantly, sick students with compromised energy levels are often subject to engage in additional bureaucratic and laborious processes to justify absences. In this way, the condition does not shape student’s identities but rather institutional rules shape opportunities and subsequent identity formation.
An Unexpected Road
In severe cases, IBD interfered with young adults’ desired future plans. For some, illness derailed their route to postsecondary education, ability to maintain consistent attendance, or the ability to attend at all. Despite Vivian’s expectations to attend a four-year university, focusing on her health senior year of high school denied her of the ability to emotionally and logistically prepare for college. In this case, Vivian decided to stay home and attend a community college instead. Here, Vivian witnessed her vision of dorm living as a traditional college student dissipate for conditions beyond her control. She made this decision based on the idea that community college and remaining in her home of origin would provide her more support than a
17


traditional four-year institution could. Vivian’s decision indicates her perception of traditional four-year institutions as deficient of the resources needed to accommodate her needs as a chronically ill person.
For people like Adam and Riley, managing IBD meant interruptions to a consistent and traditional college career. Importantly, participants describe the idealized college experience as a continuous four-year experience. When Adam and Riley realized their illness prohibited them from achieving this standard, they felt resentful and unaccomplished. Riley attributes these interruptions to his illness:
I was supposed to graduate in 2013 and ended up having to take two quarters off there because I got sick. So, I dropped out of college. It was my second time dropping out of college because of my crohns.
Riley’s prolonged graduation date and unpredicted temporary departures from school seemed to complicate his previous self-perceptions as a traditional and ‘normal’ college student. Adam experienced similar frustrations after he transferred to a four-year institution. When he could not successfully complete more than a semester, he reflected “I don’t know what happened but I think that’s when the gravity of this situation all caught up to me.” Here, Adam describes the difficulty in managing a serious illness while participating in perceivably normal experiences as a young adult and student. In these instances, participants express a sense of failure when they were not able to achieve an idealized version of higher education trajectories. These perceptions and ultimate feelings of failure communicate both the cultural importance and status associated with a continuous educational trajectory.
Others like Rob and Derek felt denied of the opportunity to attend college at all. After Rob’s expensive hospitalization, which exceeded $60,000, he felt that he could not manage the additional burden of student debt. Rob explains that even if he did make the decision to finance
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his education, full time college enrollment would impede on his ability to work fulhtime and therefore receive health insurance. In this way, larger structures like privatized education and healthcare informed Rob’s decision to attend college. Derek did not feel ready to commit to college for a different reason:
At one point, I wanted to go to college in Arizona at a technical college for auto mechanics, but I also don’t think that I was 100% ready to leave the house because of my stomach and knowing how to take care of it on my own, or go see doctors and stuff on my own.
Much like Vivian’s story, Derek’s fears communicate a perceived lack of social, emotional, or health-related resources in college settings. The actual existence of these resources seems unimportant, as this perceived deficiency effectively dissuaded him from attending college at all.
Each of these circumstances illustrate sick individuals’ interaction with educational institutions. Not only does the high-pressure culture of higher education institutions seem to contribute to flare induction, but students and non-students alike do not perceive schools as sources of support. In fact, many participants identify schools as unsupportive places driven by bureaucratic processes and rigid institutional standards. These stories demonstrate student’s perceptions of educational institutions as a detriment to their health, identity, and ability to participate in normative pathways to higher education.
Challenges in College Dormitories
Dorm living has become a normative expectation for traditional college students and, despite the barriers those with IBD endure within these settings, participants describe institutional living and, more broadly, college attendance as an essential feature of their experience as young adults. Kailyn represents these feelings when describing the desire for normalcy, and how dormitory living offers this:
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I guess [I decided to live in the dorms] just because I wanted to be normal. When you start college nobody knows anyone, you’re awkward, you just want to make friends. I didn’t want to be a weird person.
Yet, Crohns and UC limit students’ abilities to achieve this sense of normalcy. A shared living space provokes serious consideration for those with IBD: if and how they will disclose their illness to their roommates, how they will manage dietary restrictions with required dining hall meal plans, and how they will navigate limited physical space and, oftentimes, communal bathrooms situated in distant proximity to one’s dorm room. Maggie explains the difficulty in navigating dorm living with UC:
What was hard was the bathroom wasn’t in our room. You’d have to run down the hallway. I was on the top bunk, had to get off of it, grab a trash can, run to the bathroom, and I’d be there for a couple hours. It was really debilitating.
The physical structure of the dorms, which often aim to provide bathroom access to a large number of people in a small space, obstructed quick access to a bathroom and even resulted in one participant soiling herself in the hallway on the way to it. The extraordinarily urgent bowel movements associated with IBD are incompatible with communal bathrooms, a cultural hallmark of dormitory living in U.S education institutions. For students with IBD living in this context, their challenges exceed common frustrations with community living—waiting for a shower to open is not an immediate concern, but getting to the bathroom before an accident happens, and potential public humiliation, is a requirement.
For students with IBD, university-required meal plans have more serious implications than social bemoaning of unappetizing food. Meal plans often fail to accommodate the dietary restrictions that IBD demands. The limited options on dining hall menus is exacerbated for those
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with IBD, and reduces individual control, which sometimes means risking a flare or hunger. Kailyn illustrates this challenge:
I remember telling my doctor my body feels like it’s starving for nutrients like I’m living off of basically yogurt and toast and he’s like, “well there’s so many other things you could eat” and I’m like, “yeah but I live in a dorm and I go to the dining hall.”
Although with medical documentation, most universities would allow students with IBD to be
excused from university required-meal plans, many first-year students in this study lived in
unacquainted settings and had not yet established social relationships with those who lived
outside of the dorms. In this way, participants’ access to a consistent food source depended on
university dining halls. The unaccommodating and limiting options in dining halls deprived
effected students of the nutrients needed to remain symptom-free.
Shared living spaces in educational institutions necessitate relational navigation,
especially for the young adults in this study who did not have plentiful experience living with
peers before college. This process is complicated by the intersection of chronic illness in young
adulthood. Similar to other chronic illnesses, those with IBD make conscious decisions about
disclosing their illness, as disclosure often means communicating delegitimizing information
about oneself (Charmaz 2006). However, the choice to disclose is reduced for those who live in
community settings. Libby describes this experience:
I have about eight to ten bowel movements a day and we’re all sharing a bathroom. I have to share with two other people and so when I found them to be my roommates, I’m pretty sure in the first conversation I just said straight up, “hey I have Crohn’s disease so I’m sorry.” I’m just gonna tell you guys straight up that I have Crohn’s disease, cause I just wanted to get it out of the way. So I just told them and left it at that.
Libby describes the inevitability of being exposed for having Crohn’s and instead chooses to control the way in which disclosure occurred. Students who lived in intimate dorm environments
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often felt deprived of the opportunity to disguise potentially stigmatizing information, and in a sense, felt obligated to disclose their illness to strangers who become roommates in institutional housing. The very symptoms of IBD in combination with intimate living spaces affected individual’s liberty to disclose.
The added challenges of attending university as a traditional first year student is described as an essential investment to gain the social capital that college offers. When students like Kailyn, described above, explain their desire for normalcy, they describe their perceptions of a normative pathway to adulthood, and more broadly, the appeal of membership to a culturally credited group—traditional college graduates who have shared cultural experiences and consequential resources from this experience. The challenges of living in social spaces not designed for chronic illness sufferers, and the limited ability to socially manage information illustrate the disconnect between these goals of an idealized experience and the reality, alongside the institutional inability to support students with chronic illness.
Extracurricular Activities and Socialization
I had horrible pains, like, I couldn’t participate in school activities. I was in student
government and I remember having a retreat where I, like, had to go lay down during the whole thing because I was in so much pain. It was just awful. -Vivian
Most high schools and colleges encourage students to devote their time to extracurricular activities, based on evidence that suggests students who do so have more favorable outcomes than those who do not (NCES 1995). Participants describe participation in extracurricular activities like student government, afterschool volunteer programs, academic clubs, and athletic organizations as an important, and to an extent, expected part of their education.
However, participants with IBD describe a diminished ability to participate in these activities, largely a consequence of symptom management. Not only does this diminished ability
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set limitations on social, educational, and professional development, but students experience a
loss of self in these circumstances. When symptoms interfere with involvement in sports and
clubs, individuals lose membership to a group, and consequently experience a loss of identity.
Allie explains how her symptoms prohibited her from volunteering in her field, something she
recognized as important to her professional and personal development:
when I started this flare up I remember sitting and looking at the sign-up form for this thing and being like, “I don’t think I can do this. It’s 45 minutes in a van. What if I need to go?” I felt like such an imposter because I was saying I wanted to go into education and then I couldn’t even volunteer.
The loss of this opportunity challenges Allie’s perception of self, making her feel that her passion to educate, and to a larger degree, her identity as a future educator was insincere because she could not partake in this program.
Others describe symptoms of IBD as compromising their identity as high school or college athletes. Several participants had to quit varsity and club sports to focus on their health. Adam even lost the opportunity to play division one football at a well-known university. In these circumstances, symptom management forces students to depart from group membership, personal, and professional development and consequently challenges students to reorient perceptions of self. Adam explains how quitting football damaged his confidence. Before becoming sick, Adam recalls how his success in football defined him. He recalls, “I’d be like five days a week like I’m on the football team, I’m hot shit, I don’t need to do anything besides do this.” After diagnosis, Adam notes the cost to his sense of self, “it’s just like it brought me down to earth a lot.. .This [IBD] is kind of like the guy that walks around and tells you ‘you’re just a man.’”
Violating the Normal Body
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Participants who experienced bodily changes, a result of symptoms or treatment effects, quickly became conscious of what constitutes a normal body. They become cognizant of their bodily distinction in the context of educational settings, often with feedback from peers or at their exclusion from customary occasions within institutions.
Eli remembers being bullied in school for having a fat face from prednisone, a common steroid used to relieve flare ups. When he told his peers that his face was swollen from prednisone, they responded by mocking him and calling him pregnant. Max also describes the side effects of prednisone as causing him to ‘balloon up’ before senior photos. For Max, this symbolic experience brought a unique consciousness to physical changes he underwent at this time. Other participants, like Adam, describe attending the high school prom as a difficult but seemingly necessary part of the high school experience. Having lost weight from the illness, he was aware of his limitations in attending. He explains how he aimed to fit in, “I mean everyone wants to move around and dance and I’m like, I weigh lighter than a feather. I wanna die. It was, you know, I got to dress up as one of the people.” In this way, Adam identifies ‘one of the people’ as seemingly normal and distinct from himself.
Participants recall how they were reminded of how their bodies deviate from their seemingly normal peers in school settings. These experiences underscore the abstract existence of a normal body and the restrictive standards to meet it against the background of perceivably age appropriate events like prom and senior photos.
Young Adult Rites of Passage: Drinking. Hooking Up. and Traveling
As participants identified the kinds of traditional experiences they imagined were part of becoming an adult, they were aware of their exclusion from them. Specifically, drinking,
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participating in hookup culture, and the ability to travel were referenced as key experiences in high school and college settings in which they felt incapable of participating.
Traditions and beliefs handed down through generations of college drinkers serve to reinforce students’ expectations that alcohol is a necessary component of social success (National Institute on Alcohol Abuse and A1 coholism-NIAA 2002). Advertisements and sales of alcohol on and near college campuses play a role in these cultural expectations (NIAAA 2002). But despite these social pressures, over half of the people in this study did not drink alcohol in college because of symptoms or side effects of treatment. Nevertheless, they described drinking as a significant part of college culture. Maggie demonstrates the embeddedness of this expectation:
I’11 pour myself a beer at a party in like a cup so people stop asking me and not drink it.
Or IT1 buy drinks at the bars so it looks like I’ll have a drink and I don’t know why.. .it’s
like this guilty social norm.
Maggie’s attempt to assimilate to the surrounding culture illustrates the perceived significance of drinking in college. Libby, a freshman in college, similarly describes the social importance of college parties by attempting to attend one amidst a severe flare. However, she explains how her symptoms prevented her from enjoying her time, “me and my roommate wanted to go to a college party and I had to break it to her like hey, I have to leave right now. I have to go back to the dorm and stuff.” These examples illustrate how young adults with IBD feel excluded from a rite of passage in college cultures.
Others describe how IBD limits their ability to participate in hookup culture, which can be described as “frequent sexual encounters pursued by both participants without the expectation of a continuing relationship” (Monto and Carey 2014). Estimates are that 60 to 80 percent of North American college students engage in some sort of hook up experience (Garcia et al. 2010).
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While participants in this study are immersed in this culture and identify its existence, they often explain how their illness precludes them from participation. Riley explains that Crohn’s has affected the way he approaches sex, “it takes a lot of like trust with that person so if I feel like it’s gonna happen that night or that date, I won’t eat a lot of foods or anything like that.” Riley feels compelled to prepare for sex in ways that his healthy peers do not. This preparation and perceived necessity of trust disqualifies Riley from participating in hook up culture, which is often a spontaneous interaction with non-committed partners. Many participants acknowledge sexual norms in college settings, but explain how their illness denies them opportunities of sexual frivolity. To this extent, hookup culture influences how young adults with IBD perceive themselves as distinct from their peers.
Like sexual frivolity, participants describe IBD as hindering their opportunities to be
frivolous with their bodies in the context of travel. American student’s increasing participation in
study aboard programs across the United States has created a new collegiate sociocultural
expectation (Redden 2018). Participants describe their awareness of this prospect, and again,
discuss the burdensome and sometimes unmanageable processes that study abroad requires.
Kailyn describes the difficulty of navigating treatment in a foreign country. As she considered
whether she could study abroad, she wondered about access to care:
In terms of planning where I studied abroad, I had to figure out like how do I get my meds? Is there a hospital? Like, are there services I need? Whereas, a lot of people are just like, “I wanna go here.”
In this circumstance, Kailyn’s illness forces her to make careful and intentional decisions about travel, while other college students, not bound by sickness, are presumably afforded more flexibility in their choices. Riley had to renegotiate expectations of studying abroad entirely after his failed treatment plan induced a severe flare and prevented him from realizing his plan to
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study abroad, “I was supposed to go on a study abroad trip to Australia for six months and I ended up having to cancel before the trip. The day before I was supposed to leave.” Both Kailyn and Riley represent several participants who regrettably discuss their inability to study abroad as sick people bound by precarious symptoms and time-sensitive treatment regimens.
In all of these experiences, students with IBD lead restricted lives and lose the capacity to determine their own status in various forms including control over bodily appearances, participation in informal social norms, the ability to travel, and identity and group membership associated with extracurricular activities.
Conclusion
The additional barriers and consequential limitations students with IBD face in educational institutions has far reaching implications. Participants describe educational institutions and socialization processes embedded within them as incompatible with their expectations and trajectory as chronically ill young adults. Importantly, most young adults describe a normative pathway to achieving educational and social success. Participants often romanticized traditional experiences in higher education as a continuous endeavor that begins in college dormitories and ends in four years. They imagine their healthier peers as being afforded with the very luxuries they feel deprived of, including participation in perceived cultural norms like hookup and drinking culture. The inflexible standards established by larger institutions and cultural structures operate to exclude young adults with IBD from these experiences, making them feel distinct from the larger, normative culture.
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Chapter III
NOT ON OUR TIME: NEGOTATING CHRONIC ILLNESS IN THE WORKPLACE Overview
The transition to adulthood is often defined as complete when an individual secures fulltime employment and attains financial independence (Osgood et al. 2005). Young adults’ transition into full-time employment means adapting to potentially unfamiliar professional processes and cultures. Participants in this study show that this process is complicated for young people with illnesses whose mere age limits their ability to have achieved abundant professional experience and therefore workplace seniority. Managing chronic illness during this transition requires thoughtful navigation in terms of how to manage disclosure and potentially request accommodations. This chapter highlights participants’ challenges with the demands and expectations of working in a capitalist economy, in which professional roles and time investments in work are emphasized as an important part of transitioning to adulthood.
Being the New Kid
Entering the workforce as a young adult often requires transitioning from student to professional, which can include significant emotional, personal, and professional transformations. For many young adults who have only ever worked in casual part time positions or whose experience is limited to higher education, entering the workforce requires navigating potentially unfamiliar cultures, norms, and expectations. This can include negotiating accommodations and leave, which is an especially important process for sick individuals who frequently require time off of work. For young adults with chronic illness, this challenging process of learning how to manage work responsibilities is increasingly complicated by illness.
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Many participants felt that their ability to prove themselves as reliable workers would be compromised if they communicated their needs to their supervisors and colleagues. They feared they would be perceived as entitled, indolent, or unworthy of employment by those they worked for and alongside. Young workers with chronic illness described an exacerbated sense of concern in proving their value as both new and sick individuals. The intersection of illness and age define the experiences and perceptions of participants entering the workforce.
Rob represents a common experience of these intersections. Rob’s employers did not offer adequate benefits to accommodate him as a chronically ill and new employee. After being hospitalized for a week, Rob describes his anxiety to return to work as an unestablished employee:
I was more worried about my job because at the time, I was like, I already missed a week of work. I was just like, I’ve only been at this job for six months and I’m already missing a week and we don’t have any vacation days yet. I got out of the hospital on a Friday and then went back to work that Monday.
Rob’s status as a new employee fueled a sense of insecurity and influenced his decision to return to work only two days after he was released from the hospital, sooner than would be advisable. As a new and sick employee, Rob shared an awareness of his limited options at his company without Paid Time Off (PTO) or vacation days. Rob’s company reflects national trends in the United States, which is the only advanced economy in the world that does not guarantee workers paid vacation days or require that employers provide their employees with paid sick leave (McCarthy 2017). Unfortunately, paid vacation days are often allocated to more senior employees in Rob’s company, which is particularly problematic for Rob as a sick young adult who had invested less time in the company than that of more established employees.
In the absence of paid sick leave or vacation time, Rob experienced significant anxiety and worry, and tested his boundaries by making a quick return to work. Unfortunately, Rob did
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not mention the Americans with Disability Act (ADA), which forbids firing discrimination of disabled employees. Although this resource exists, it remains underutilized when potential beneficiaries are uninformed or find them inaccessible. On the other hand, the federal Family Medical Leave Act (FMLA), which provides unpaid leave with job protection once a worker has accumulated 1250 hours in a year and works for an employer with at least 50 employees within a 75-mile range, does not apply to Rob as a new employee. Here, the FMLA does not adequately protect new employees, who are often young adults like Rob. Clearly, this is problematic for young adults and new employees with chronic illnesses. This rule, based on company seniority, denies many young adults (who are often new employees) with chronic illness legal protection in the case that they take time off because of their illness.
Tate experienced similar anxieties despite working for a company that offers unlimited sick days and paid time off. The onset of Tate’s illness occurred during his first year at, what he defined as, “a real job.” Although his company communicated exceptional flexibility, Tate still felt that in order to establish himself he must work on days he was feeling sick. When I asked why he felt this pressure he explained:
Because a lot of our office is younger, no one is that sick that would warrant being away for that long. So, if you are super sick and need that time it’s easy to think that your peers see that as you cheating the system.
Tate’s work environment with other young professionals influenced his fear of judgement. The homogeneity of young people in his office made his experiences as a sick young adult seemingly exceptional. Tate offers an important perspective by explaining the cultural assumption that young people are mostly healthy and seem unlikely to need extended periods of time off for health-related issues. As a result, Tate felt others would inevitably presume he is healthy because of the seemingly natural relationship between age and health and assume that his absences reflect
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lack of responsibility or honesty. The presence of other young employees who did not often need to utilize their sick time made Tate feel that using his paid leave would make him appear as a deviant or unreliable new hire. In this context, Tate felt significant pressure to work during a flare because of his identity as a young person, and by extension a new employee.
Experiencing sickness without having established seniority or a reputation as a competent worker often undermined young adults’ confidence and even derailed their opportunities for advancement. While Lindsey was hospitalized during a severe flare, her managers directed other employees to absorb her work. Despite Lindsey’s hard work on individual projects, she felt that after returning, she was denied opportunities to demonstrate her capabilities and move ahead.
She explains, “It just felt like, I wasn’t getting opportunities to advance the way I wanted to and I was being kind of babied, right? Because I was young and they didn’t know anything else to do.” Here, Lindsey identifies her age as a factor that contributed to this loss of opportunity. Perhaps with more experience in the company, Lindsey would have retained her position and the territories she controlled within the company. Rather, at the intersection of her status as an unestablished employee and chronically ill person, Lindsey felt she had lost the ability to work autonomously and to progress within the company. She describes how this threatened her identity as a capable worker and instead left her feeling like an “incompetent, broken, little, tiny, fragile bird.”
Chronically ill young adults without workplace seniority observe limited benefits and opportunities. This section underscores how chronically ill young adults felt unaccommodated by their employers in times of ill health and often felt forced to defend their contribution in the workplace as both young, unestablished employees and chronically ill people.
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Disclosure
Most participants described struggling to decide how they would disclose their illness to their employers. Navigating any new work environment can be an intimidating and confusing process and for young professionals with chronic illness, this process is complicated by the possible outcomes of their decision to disclose. Disclosing chronic illness means offering delegitimizing information about oneself and risking a loss of acceptance, autonomy, and opportunity (Charmaz 2006). This is especially concerning for people with IBD, as a nationally distributed survey found as many as 25 percent of employers would not continue to employ those who developed the disease (Moody et al. 1992). Young adults with chronic illness who are, sometimes, inexperienced in professional settings, must navigate difficult questions concerning disclosure. Allie explains the difficulty in deciding how much to disclose about the disease for future job opportunities:
I think when I do approach it that is gonna require a different skillset than I’ve had so far in talking to an employer and navigating that line between telling them enough information so they know you’re not just trying to skip work versus not grossing them out with all the gory details.
Allie imagines struggling to identify the boundary between what constitutes public and private information and plans to carefully balance a line that allows her to disclose enough information to legitimize her illness but does not inflict discomfort on recipients or herself. Allie’s inexperience in professional settings makes this future decision particularly difficult.
Several participants echoed this concern and elected for vague language when discussing their symptoms in the workplace. Instead, participants referred to specific symptoms and procedures as “general doctor’s appointments” or “stomach issues.” Rob explains of his employers, “They know the bare minimum. They know I have to use the bathroom a lot.” Ambiguous language and concealment of stigmatizing details provides affected individuals
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control over the extent of their disclosure. This strategy can be empowering, but omitting
important information in dialogue with employers also limits their ability to request and receive
accommodations that can influence their quality of life. Overwhelmingly, young adults in this
study felt underprepared to discuss medical information with employers and expressed feelings
of naivete surrounding medical dialogue and accommodations with employers.
Even timing of disclosure was important for participants. Instead of disclosing their
illness at the time of the job offer, several participants preferred to wait until uncontrollable
symptoms necessitated disclosure, after which time they would have more experience in their
jobs and with their supervisors. In these circumstances, disclosure was a reactive, rather than a
proactive development. Libby explains her thought process, “I think I’ll tell them later on and
not the first thing I tell them because I don’t feel the need to have to tell my managers until my
symptoms are a lot worse.” Without plentiful experience in negotiating compensation and benefit
packages, chronically ill young adults who avoid disclosing their disease may not be able to
request the immediate and necessary accommodations their illness might demand. The
precarious nature of IBD results in unexpected complications and oftentimes, hospitalizations.
As a result, those who wait to disclose until an unanticipated and traumatic event sometimes
reconsider their decision to delay disclosure. After Max’s hospitalization, he reflects on his
decision to avoid disclosure upon his hiring:
I thought about that in the past couple of weeks, like, I don’t-I don’t know that I should have, or that anybody should have, like obviously there’s no legal requirement to disclose that you have an illness. I-I, you know, I certainly told them now.
Max hesitantly questions if his experience would have been more positive if his employer had been aware of his condition prior to hospitalization. By experiencing a flare up that required hospitalization, Max was unable to immediately meet work expectations, which generated
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feelings of guilt. This compelled him to disclose his illness to his employer. Those who make the decision to withhold information until it is unavoidable often felt obligated to disclose in turbulent times of ill health. Many noted that having to tell employers during times that were already challenging was time consuming and added to their stress.
Sometimes, participants felt compelled to disclose because new opportunities at work presented new challenges. For example, Eli felt forced to disclose his illness, when his work required he move to a new state, which is not an uncommon request for young adults who make up 43 percent of all movers (Godfrey 2016). Eli proactively communicated that he needed advanced notice before his move, but in an attempt to conceal his illness, he did not directly express why he would need extra time to coordinate his relocation. Understandably, Eli would have to transfer care to a new state_and locate new providers. However, his work disregarded his request for weeks and did not provide him with the information he needed. This ultimately resulted in Eli unwillingly disclosing his illness to his employer in an effort to receive the information necessary for this transition. By ignoring Eli’s initial request, the company made him feel like he had limited agency in controlling his personal medical information. This experience led Eli to view his company negatively and ultimately led to his resignation. He explains this decision, “That’s part of the reason why I didn’t like North Carolina, because that whole experience left a huge, just terrible taste in my mouth, with the company and its policies and what they kind of believed in.” Eli felt that as a person with a chronic illness, he could not continue to work for a company that overlooked the requests of its employees.
Lindsey initially delayed disclosing her disease status at work, but has since changed tactics. She now chooses to tell employers early on. She explains this decision, “I disclosed during the job offer process because I had learned very quickly, I am my only advocate, nobody
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else is gonna advocate for me.” Lindsey’s previous experience with unsupportive employers during an unexpected medical emergency helped her to decide that disclosing at the time of the job offer would provide her with the most protection. By electing to disclose immediately, Lindsey shares feelings of self-advocacy and empowerment. Perhaps more importantly, there is emotional security in having informed employers prior to an emergency.
Unsupportive Colleagues
When young adults chose to disclose their illness status, they were often frustrated or disappointed with how the information was received. Often, participants received uncompromising and insensitive responses from superiors when they requested time off or needed advanced notice to accommodate their treatments. Much like issues surrounding seniority and disclosure, many chronically ill young adults described feeling unsupported or misunderstood by superiors and peers in the workplace. Treatment for IBD sometimes means the administration of biologies, which require intravenous infusions every four to six weeks. This process demands that affected individuals attend a clinic and wait for two to six hours while the medicine is dispensed. The immediate side effects of biologies include severe fatigue and drowsiness, sometimes causing temporary dysfunction. Evidently, for most working people, infusion schedules require time away from work. Taking time off of work for treatment becomes more complicated for those who choose not to disclose and for those who are not already well established within the companies they work for. Undoubtedly, larger structures and economic institutions influence the reactions of employers and peers.
Many participants describe receiving responses from employers or supervisors that were unaccommodating, and unsympathetic. When Adam requested time off for his treatment schedule, his supervisor recommended he reserve the weekends for medical purposes (a time at
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which infusion centers are closed). This response angered Adam, making him feel as though his employer prioritized the company’s productivity over its employee’s health.
Adam’s inability to work seemed to violate company commitment and common American workplace expectations of long and consistent time investments, with the average American averaging 49-hour work weeks (Ellin 2003). Illness and vulnerability expose these unrealistic expectations and shows how those who need support often feel as though their health demands are undermined by the economic demands of the companies they work for. Chronic illness violates cultural expectations that young workers should be healthy and seems to unearth capitalistic tendencies in many participants’ workplaces.
Lindsey’s narrative demonstrates that these reactions are not limited to superiors. After explaining her time-consuming treatment regimen to a colleague, the colleague said she “probably wouldn’t have to take a whole half day to go do that.” And that she “could probably just take two hours and go back to work.” Not only was this response insensitive and uninformed, but it illustrates how workers internalize U.S achievement values of productivity and that even medical treatment should be time-limited, irrespective of how one feels (Varul 2010). Lindsey’s incapacity to consistently satisfy ordinary full-time hours resulted in a loss of social approval from her colleague. Lindsey and Adam’s stories illustrate how American workplace culture and its emphasis on working, producing, and money-making undermine values of health, well-being, and community. These pressures are incompatible with participants’ lived experiences and often resulted in social and cultural exclusion and marginalization.
Social exclusion also came in the form of insensitive and stigmatizing commentary from young colleagues. Tate and Lindsey made this observation in the context of work environments
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with other young professionals also vying for advancement. Lindsey explains, “I work with a lot of immature younger people and there were lots of very hurtful comments made.” These comments were so detrimental to Lindsey’s self-esteem that she decided to quit her job after only one year at the company. She recalls one particular younger colleague’s reaction as the impetus for her departure:
One of the big ones I remember is I got up and very quietly, left a meeting and one of my very good friends who used to work with me told me that this guy, who got these opportunities, was being a total bully at work. He’s like, “Does she seriously have to get up and shit that much?” to a room of 11 people. To my boss, his boss, and all my peers. The people laughed. They thought it was funny.
This comment exposed intimate and stigmatizing details of Lindsey’s illness, but also
professionally discredited her by highlighting a particularly stigmatizing limitation to her effort
to present herself as a professional. In a moral capitalistic economy, occupations often help
define identity, making these kinds of comments especially damaging to one’s sense of self
(Chandrasekhar and Ghosh 2018). Lindsey attributes insensitive social reactions of her peers to
immaturity associated with younger aged people and attaches meaning to age and lack of
professional experience. Noting the significance of experience, she explains that colleagues who
were younger adults were unsupportive and detrimental to her professional development, while
more experienced superiors were “supportive and so fantastic.”
Tate also felt other young professionals judged him because of the nature of his
symptoms. When Tate experienced an urgency issue in front of a younger colleague, his
colleague laughed and asked if he had to poop. At the time, Tate laughed with his colleague but
now reflects that, “I wish I had to poop. I had to go do something that didn’t even resemble
pooping.” Tate felt that the seriousness of his illness was reduced because of the nature of his
symptoms. These feelings were perceivably exacerbated by age. Similar to Lindsey, Tate
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describes older colleagues as more sympathetic and younger colleagues as uncompassionate who
identified his illness as an “older person’s issue.” Without knowing why older colleagues were
more supportive, one can imagine that this is a product of accrued professional or life
experience. In either case, young adults with IBD felt misunderstood, discredited, and
stigmatized in the presence of other young professionals, making consistent employment and
successful integration in work cultures challenging.
Professional Presentation Versus Urgency
Young adults described their current and future career choices as structured in relation to
bathroom proximity. Many participants worried that urgent symptoms would interfere with their
ability to present themselves in a professional manner. This was particularly concerning for those
whose positions required consistent social engagement, presentation, or supervision. For
instance, school teachers often worried about their ability to dependably supervise a large group
of minors. Maggie, a fifth-grade school teacher, has employed a variety of strategies to ensure
consistent supervision including texting other teachers or administrators to quickly come watch
over her classroom. Unfortunately, Maggie explains that this strategy does not always work:
Sometimes with colitis, you literally can’t even hold a fart in and you like don’t know what’s gonna happen. So, I’ve learned if I’m having issues, I’ll wear a big pad and that way if anything happens then hopefully that helps.
Allie, who plans to become a teacher, anticipates the very issues Maggie experiences as a teacher
with UC, “If there comes a day that I’m in a really bad flare up, I can’t go to work because I’m in
charge of a room of 25 sixth graders. I can’t just leave to go to the bathroom whenever.” To
protect against these concerns, Allie considered alternative careers that require less social
interaction, explaining, “my fail safe is that if I can’t cut the teacher life, I can always be a
remote software engineer.”
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Vivian expresses similar concerns when considering her future career as a therapist and explains, “I worry about it a lot when it comes to counseling, like, if I’m sitting in a session and I have to go use the bathroom.” Vivian ultimately describes this feared scenario as an inevitability and, as a result, plans to be transparent with her clients. Sadly, she does not describe this plan as providing her with confidence that she will be successful in her chosen career. Instead, she imagines she deviates from professional norms of counseling and feels that she will “somehow be subpar because of IBD” She explains of her fears, “I guess my main worry career-wise is just the way the career I’m going into works, that I won’t function in it as well as other people.”
Others, like Libby, imagine themselves in careers that do not offer quick or easy access to a bathroom. Libby dreams of being a biomedical researcher, but she worries that collecting data outside and away from a bathroom will impede on her ability to successfully conduct her work. To protect against this possibility, Libby describes how finding an employer who offers accommodations for disability is a necessity.
Young adults with IBD express anxiety surrounding their ability to experience professional success while managing stigmatizing, urgent, and uncontrollable symptoms. As a result, young adults’ frame their future careers around their illness and employ a variety of strategies to mitigate potentially detrimental and professional consequences.
Conclusion
Young adults living with IBD face particular challenges as they aim to launch their careers. At times, they experience a lack of organizational and interpersonal support from both superiors and colleagues. As a result, many participants have resigned from companies and felt misunderstood, belittled, and excluded. Without ample experience negotiating work leave and accommodations, young adults with chronic illness often avoid disclosure. As illustrated,
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avoidance has implications for likely future events that often require accommodations that could only be provided as a result of disclosure. However, when participants did disclose their illness, they were often met with unsupportive reactions from peers and superiors. These reactions seemed to derive from a variety of ageist, capitalistic, and ablest biases in the workplace. Participants’ experiences were uniquely shaped by their identities as young professionals and chronically ill people embedded in a country that does not guarantee paid sick leave and expects quick recoveries and returns to work. As a result, young adults often worried that they would not be successful in their future careers as sick people. Evidently, cultural assumptions of health in young adulthood make chronically ill young adults’ identity fall outside of societal expectations, often resulting in employers overlooking participants’ experiences and subsequent needs.
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CHAPTER IV
TRYING TO FIND A BALANCE: REDEFINING RELATIONSHIPS AND FAMILY Overview
Emerging adulthood is a unique juncture in the life course where young adults occupy liminal spaces in both informal and formal institutions. While young adults continue to be invested in their family of origin, they also focus on opportunities to create their own families. Cultivating and establishing substantive intimate relationships with romantic partners typically precipitates family formation (Arnett 2011). However, research shows that young adults in vulnerable populations are less likely to marry and have a family before the age of 30 (Osgood et al. 2005). This chapter evaluates how young adults with chronic illness strike a balance between seeking familial support and developing independent relationships and families. Finally, this chapter explores the complications of independent romantic relationships and family formation for young adults living with IBD.
I can do it and I need help Shifting Social Support
Emerging adulthood is a time of transitioning social support. While families of origin provide various forms of support to young adults, young adults are also positioned in a social part of the life course that offers a plethora of opportunities for building relationships outside of the family of origin. To achieve a sense of independence, participants foster relationships independent from their family of origin for emotional and, sometimes, physical support. During this process, young adults’ social support often transitions and fluctuates between their family of origin, friends, and intimate partners.
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Participants seemed to negotiate their social support according to their identities as young
adults with a chronic illness. For many participants, this meant having considerable support from
diverse social groups. Importantly, varying sources of social support do not exist in isolation to
others. Many participants described various groups as taking “shifts” caretaking when their
health was severely compromised. Max explains how both his mom and his girlfriend flew from
out of state the week he was hospitalized to support his emotional and physical needs. Similarly,
Lindsey describes feelings of gratitude for the time her family, best friend, and boyfriend
contributed throughout her hospitalization. She explains how care shifted between people, “my
mom was there and she helped me for about a day and then Kelly, my roommate, took over.”
Simultaneous social support from family and those independent of family reflects young adults’
transitional period of emerging independence.
Sierra’s living space symbolizes how participants navigated conflicting expectations of
independence as young adults and the necessity of familial support as chronically ill people:
My dad built a studio apartment on our property, so I live in the studio. So, it's like, I feel like I have my own freedom, but I still live in the same house, so if I need something, they can just come right in, or I can stay in the house.
Here, Sierra is afforded with a semi-independent living arrangement that supports her identity as
a young adult and her needs as a person who suffers from IBD. Many participants describe semi-
autonomous sequencing in living arrangements including living at their parent’s homes while
attending college, intermittently moving back home, and returning to their home state after
moving away for school.
Those who moved out of their home state found supportive resources outside of their
families. Lyle explains finding friends in a new state as a necessity for his health:
When I came out here, I was like I need to make friends. It wasn’t like I needed to find friends because I needed to be social. It was like every eight weeks, I need to go the
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hospital and like, I wanna have someone in my life that’s a friend that won’t see taking me to the hospital as a chore.
While Lyle successfully moved to a new state, like many other transient young adults do, he
anticipated requiring additional support as a chronically ill young adult in a new environment.
Others similarly relied on their friends to care for them. In fact, Lindsey was diagnosed only after
her friend hugged her, noticed her severe weight loss, and took her to the hospital.
However, the process to independence often begins by resisting support from family
members in times of need. Kailyn recalls testing her personal boundaries in the dorms:
Finding the good balance, mainly with my mom, of her being worried when I would get sick but me like, so wanting that independence of being a freshman. Like, no you don’t need to come, like I’m sick, I can handle it on my own but also wanting to be like, ‘I feel like I’m dying, I want someone to take care of me.’”
By resisting her mother’s care, Kailyn achieved a sense of independence as a young adult in
college. Yet, she was aware that she wanted someone to provide care for her. In instances like
this, Kailyn supported herself or relied on friends she had met in the dorms to care for her in
times of need. Similarly, Lyle made a very intentional decision to undergo intestinal resection
surgery in the state that he attended college rather than his hometown where his parents resided.
While Lyle acknowledged that going home would make this process “a lot easier,” he chose to
remain in his new college town. This was an empowering experience for Lyle. He
enthusiastically recalls, “I got it [surgery] here!” Instead of relying on his parents, Lyle sought
support from his roommates and successfully underwent a life-changing process in a space he
decided to define as home.
For Rob, who was single and living with his father, he rejected his father’s offer to stay in the hospital with him overnight. He attributes this decision to his age, “I was like, ‘no I’m 24,
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you can leave.’” In this instance, Rob identified his age as an indicator of independence that required he stay in the hospital independent from his father.
Others described partners as a source of support that facilitated their transition to independence. Maggie explains of her current boyfriend, “I think as I get older, if I do need more support through health things, it’s gonna slowly change from my parents helping to Joe [helping] and I think he knows that, too.” For some, this process already began to take place. Simon describes his wife as his biggest source of support who schedules doctor’s appointments for him, accompanies him to appointments, and provides emotional support. Like Simon, many young adults who established serious long-term relationships often resorted to relying on their partners rather than their parents. These shifts are marked by the process of resisting familial support and establishing relationships and security independent from that of their parents. However, as shown, this process is complicated and elaborate, often marked by semi-autonomy.
Financial Support from Parents
Chronic illness coupled with changing social, economic, and cultural contexts impact young adults’ route to adulthood. The United States’ primarily privatized healthcare system often results in long term financial burdens for those who are chronically ill (Tu 2004). Participants described the cumulative cost of hospitalizations, medications, and doctor’s visits as major sources of financial distress. For the adults in this study who have not secured financial independence or a career that offers health insurance, economic responsibilities are often absorbed by affected individuals’ family members.
Financial support produces competing feelings for young adults who seek independence but cannot meet the financial obligations of managing IBD and nearly all participants defined adulthood in terms of financial independence. Derek represents participants’ definitions of
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achieved full adult status, “I guess making adult decisions and doing adult things, so like paying bills, working a full-time job, and being responsible for yourself.” Unfortunately, many felt that they could not yet identify as adults because of continued financial help from their parents. Vivian’s experience illustrates how her disease increased her sense of dependency on her parents:
It made me more reliant on my parents than I would be otherwise. Even still, I’m more reliant on my dad because he pays the medical bills. So, like, I am reliant on him financially for that and I’m on his insurance. So, I think that’s hard, that I don’t like feeling dependent on him in that way still.
Like other young adults, Vivian expected to establish financial independence from her parents by the time she had graduated college. However, the costs of health insurance limited her ability to finance her life independent from her parents.
Similar to Vivian, Allie identified costly medical treatments as an interfering with her determination to remain financially independent from her parents. She explains this process, “I remember walking into CVS trying to get it [a prescription] filled and it was $900 and I didn’t have a credit limit that was that high. I think that was the first time I called my mom.” Allie’s vigorous attempt to achieve financial independence, a marker of the transition to adulthood, could not be achieved as a young adult without sufficient resources in a healthcare system that places financial burdens on sick citizens.
This sense of dependency can be detrimental to one’s identity as an adult, with several participants describing feelings of guilt because of this. Allie suggests feeling as though her financial dependence interrupted her mom’s life, “my mom has a life of her own and yet I’m constantly emailing her about refunds and coverage and insurance stuff. So, I have felt as if I’m a burden in that way.” Adam similarly explains his inability to contribute as guilt producing,
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especially when his parents reminded him of the financial burden his medical care has inflicted upon them. He recalls awkwardly listening to his parents’ complaints, “I’m just sitting there, like, there’s nothing I can do, so.” Young adults without sufficient experience navigating insurance or the means to pay for their own care continued to rely on their parents, often creating feelings of dependency and guilt.
While this financial reliance is undoubtedly shaped by the healthcare system, it is also a product of the Affordable Care Act (AC A) which made it possible for young adults to remain on their parent’s insurance until the age of 26. In this way, young adults have access to continuing care that would have otherwise been inaccessible, but it also lengthens the financial interdependence between adult children and their parents. Relying on parents for financial assistance often damages one’s sense of independence, creates guilt, and ultimately damages self-esteem.
Even so, medical costs can be challenging for parents too. Adam’s family’s experience illustrates this. Adam’s mother, who had not previously worked for wages, got a job to help alleviate medical debt acquired from Adam’s IBD treatment. In addition to his mom assuming this role, his parents withdrew money from their retirement fund, prolonging their working years. In Adam’s circumstance, costly health insurance damaged his parent’s economic health and required a fundamental change in their life trajectory.
As a result, several young adults yearn for financial independence that they cannot achieve because of medical expenses and debt. Along with many others, Adam explains that he is most looking forward to being able to pay his own bills even if that means added financial stress. Vivian similarly imagines a future of financial independence, “hopefully, I’ll get a good enough job after graduate school to pay my medical expenses and have good enough insurance.”
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Hopes for financial independence communicate the deep sense of guilt many participants harbor as young adults who are expected to make successful adult transitions to financial independence, but are hindered from doing so because of the costs of their illness.
Relationships with a Catch
Forming relationships include new challenges for young adults with UC and Crohn’s.
Symptomatic manifestations of IBD challenge cultural norms of cleanliness and attractiveness,
making IBD a particularly deviant and stigmatizing illness (Saunders 2014). Many studies
underscore the consequences of this stigmatization and illustrate that young adults, specifically,
feel embarrassed, humiliated, and physically diminished by stigmatizing symptoms (Daniel
2001). Consistent with other studies, young adults identified their symptoms as shameful,
especially in the context of romantic relationships. Participants described symptoms, which
include frequent and urgent bowel movements, loose and watery stools, rectal bleeding,
incontinence, severe weight loss, and fatigue, as complicating normative expectations of
attractiveness and sexuality in young adulthood.
Many found these symptoms to be detrimental to their burgeoning intimate relationships.
Vivian explained a loss of esteem when experiencing stigmatizing symptoms, noting “it’s hard to
feel attractive, like, when you have diarrhea issues, you know?” Similarly, Rob identifies IBD as
a hindrance to his sexual life, “I mean it’s bowel stuff, so obviously going to the bathroom and
all that is gross to some people. It’s a subject that you don’t want to.. .you wanna avoid with a
significant other or a girl that you’re just having sex with.” Even Tate, who is currently in a
committed relationship, indicates the challenge of forming a relationship with this disease.
I’ve had a girlfriend the whole time since I’ve been diagnosed and even a couple years before that but if I hadn’t, it’d be so hard to meet someone and explain to them like, “hey I’m gonna be waking up at 5am to have violently loud diarrhea”
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Feelings of unattractiveness and embarrassment commonly resulted in reduced sexual activity and romantic involvement. Internalizing these stigmas has serious implications for young adults in both cultural and generational contexts. In the past, young adulthood has been empirically characterized by relationship development and an increased sense of commitment to romantic partners; however, recent studies show that relational dynamics in early adulthood are less focused on long term commitment and instead characterized by more sporadic and casual romantic encounters (Schulman and Connolly 2013). This cultural transition has delayed the average age of marriage to the latter half of the third decade of life (Schulman and Connolly 2013). This transition has implications for young people living with IBD, specifically regarding their engagement in hook up culture.
Participants in this study did not perceive themselves as being afforded with the same privileges as their healthy peers in this regard. These young adults felt they had a very limited capacity to liberally engage in short-term, casual, and unsubstantial relationships.Jnstead, they frequently identified their goals were to find a long-term partner. For some, perceptions that their disease would continue to worsen inspired a sense of urgency to this search. Allie, for example, explains how IBD denied her of sexual frivolity and casual engagements. She explains, “I need to find someone and settle down because once this gets worse no one will want me.”
Unfortunately, “settling down” proved to be a challenge in a culture marked by casual dating, informal relationships, and sexual liberty. Several participants discovered how their relational expectations were inconsistent with other young adults entrenched in this culture. Disclosing information about the disease sometimes resulted in participants being able to detect immediate apprehension in their dates. After Sierra disclosed her illness on a date, she recalls, “you could see on his face that it wasn’t for him.” Participants who regularly experienced
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reluctant dating partners after disclosure perceived this to be a consequence of age and immaturity. After Lindsey told an ex-boyfriend about an upcoming infusion, he slowly stopped contacting her. Retrospectively, she describes him as “just really immature and not ready to lock it in with somebody who was going through something like this.”
These experiences ultimately led to more conscious romantic decision making. Several participants refused to date those who expressed apprehension or remained uninterested in a long-term commitment. As a consequence of experiencing unsupportive and perceivably immature responses, another participant, Libby, elected to date older people who she imagined could handle the information better. In this sense, having a serious illness narrowed young adults’ options.
Others describe the uncontrollable nature of IBD as informing relational choices. Eli expresses this perspective, “there’s nothing I can do about it, and if they’re [potential romantic partner] not okay with it, then it’s a waste of both of our times.” Because Eli cannot control his symptoms, he requires that a potential partner be comfortable with his illness. Sierra echoes this sentiment, “so if you can’t handle it, then just leave now.” These statements demonstrate young adults with IBD’s intolerance of unsympathetic reactions. As the last section indicates, many romantic interests behaved inconsistent with these prerequisites, restricting the availability of partners.
Some participants resisted seeking relationships entirely because of their condition.
These choices were often influenced by fears of being burdensome. This sort of internalized guilt is expressed by Adam, who has refused to commit to a serious relationship since diagnosis. He explains this thought,
I don’t wanna sign anyone up for that because you can explain it to them when you’re healthy and they’re, like “oh but he’s healthy now.” But when shit hits the fan, you know,
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no one really wants to stick around for that. I mean people will but I don’t really want to sign someone up for it when they don’t realize that or something.
Adam identifies the precarious nature of IBD as especially problematic for long term relationships. He outlines his fear that the unexpected onset of symptoms could place an unanticipated encumbrance on a partner. Whether participants felt compelled to establish a longterm relationship or avoid one entirely, they expressed expectations that tended to deviate from broader cultural trends of frequent and non-committal sexual and romantic encounters.
Although these expectations reduced romantic opportunities, they also led others to uniquely intentional and supportive relationships. Over half of the participants in this study considered themselves to be in long term committed relationships. In a way, having a chronic illness provided participants with an effective guide in determining the perceived worthiness of relational investment. This realization often occurred after early-on interactions with their partners. Simon explains of his now wife,
It’s transcended my relationship with my wife especially since we were only dating six months. It was still a pretty fresh relationship and she was there with me the whole time, so it was just like, I’ve gotta keeper here. This is my woman. She’s amazing. It was almost like a short cut because it was like I wanna be with this person for sure for a long time.
In this way, Simon felt better prepared to identify those worthy of his time because of the seriousness of his illness. Like Simon, many participants described their current partners as expressing interest and concern upon disclosure. On Lindsey’s first date with her now husband, she describes his curiosity and questions as a comforting and honest exchange. Sometimes, after disclosure, partners shared equally vulnerable information to alleviate the burden of exposure on those with IBD. Partners who were immediately receptive, curious, and accepting promoted validation which commonly precipitated successful and supportive relationships. In this way,
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many participants described their current partners as their primary care-takers—emotionally, physically, and financially.
Of course, those who successfully partnered with someone also experienced challenges in
their relationship. Again, normative expectations of sex and activeness seem to be incompatible
with common symptoms of IBD. The very nature of symptoms influences feelings of
uncleanliness and lethargy, effectively disrupting sex lives. James explains that sometimes after
work, he’d drift off to sleep without noticing and guiltily tell his wife that they could try again
another night. Tate explains the risk of incontinence as effectively dissuading him from sexual
activity, “I could shower all I want but I just felt so unclean and, like, so nervous that I’d have to
go the bathroom or that I smelled or whatever.”
Despite most partners expressing support, many participants felt an overwhelming sense
of guilt for not being able to satisfy their partner’s physical and emotional needs, specifically as
young people. Maggie, for example, explains how the combination of normative expectations of
youth and desire for intimacy accumulate and result in overwhelming guilt:
I feel bad a lot actually. I feel really sad that I, like, can’t provide or give him that connection, you know? You wanna be in this sexy dress and be wild cause you’re young! And then, you’re like, “I don’t feel good, that’s the last thing I wanna do.”
Maggie goes on to explain that her guilt is not a consequence of her partner’s reaction. Rather,
Maggie internalized societal expectations of young adults’ sexuality and experienced guilt as a
result of this. Tate similarly explained that a declining sex life at this part in the life course
damaged his sense of self and made him feel like he was “an 80-year-old trapped in a 23-year
old’s body.” These comments represent participants’ perceptions of norms that support
heightened sexual activity in young adulthood, including in young relationships. Unfortunately,
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several participants internalized this powerful social construction, resulting in the exacerbation of isolation and guilt.
Expectedly, many participants felt they could not accommodate their partners’ emotional needs. Existing literature on chronic illness demonstrates how illness often has a detrimental impact on relationships (Drossman et al. 1989). However, relationships at this point in the life course are typically expected to be reciprocal, loving, and satisfactory (Braun et al. 2018). These competing expectations make experiencing chronic illness in young adults’ partnerships particularly difficult to navigate. Max and James describe themselves as having a reduced capacity to fulfill their roles as supportive and active partners. Max explains, “Like, I can’t say that it helps me be more of an attentive, respectful, um not respectful but like, showy, caring partner. Like, I have less to give.” Max’s inability to provide sufficient emotional support results in serious guilt. He solemnly reflects, “I wish I wasn’t doing this to her. She deserves better than this.”
While Max refers to a reduced emotional capacity, James discusses how IBD has
hindered his ability to partake in dates or activities with his wife. He says, “it [going out] can be
strained sometimes just because I know she wants to get out and do things, but she doesn’t want
to do them without me. I feel bad.” James feels that his inability to participate in public dates,
gatherings, or activities hindered his wife from living the life she desires. However, Maggie
provides a narrative that legitimizes James’s reluctance to go out. Through intermittent laughs
and red faces, Maggie explains her experience managing symptoms on a date with her partner:
So we sit down and I started farting and I knew it wasn’t just a fart and we had just ordered. And I looked at Joe and was like oh my god, I need to go to the bathroom and he was like are you okay? And I was like no and I was just like, God! So, I threw my underwear away and I tie my sweater around my waist. I went to him and we didn’t even get our food yet and I was like, “I’m gonna go to the car, we need to get this to go.”
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Situations like these are not uncommon for people with IBD and going out during a flare means risking public humiliation and exposing stigmatizing information to intimate partners. Thus, many participants described remaining in the comfort of their own home as preferable. This is consistent with existing studies that suggest reduced living spaces as a consequence of symptom management (Brydolf and Segesten 1996). Unfortunately, participants suggest that their symptoms prohibited their participation in seemingly normative expectations of dating and activeness for young couples. These social expectations do not reflect the realities of those with IBD, leaving many affected individuals feeling like negligent or incompetent partners.
Sierra, who was on disability before her 25th birthday, describes these feelings in terms of
failure to equally contribute financially to the relationship. Considering the meager compensation
that disability provides, Sierra’s partner is the primary financial provider. She describes feeling
embarrassed by this and expresses her desire to work, “If we're ever... don't have a lot of money
or something one month, I'm always like, I wish I could work, because if I could work then we
would be okay.” Similar to others, Sierra internalizes this guilt despite her partner’s enthusiastic
willingness to provide financial support. Lindsey echoes this sentiment but with emotional
support. After explaining that caregivers are equally as damaged by the disease as those who
suffer from it, she explains feelings about her relationship with her partner:
I feel guilty. I think a lot of people feel this way about their primary care giver but I feel like I have to watch myself so that I don’t just continually dump on him about things.
As demonstrated, chronically ill partners felt more likely to depend on partners for financial, emotional, and physical support, and, sometimes, felt less able to reciprocate support that is provided to them. Evidently, this creates guilt. Perhaps, this guilt is exacerbated for young adults who are situated in a part of the life course that is commonly identified as a time of abundant health and, subsequently, the presumable capacity to engage in reciprocal relationships.
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Incidences of chronic disease rise sharply with age and are disproportionately associated with later stages of the life course (Prasad et al. 2011). Therefore, older adults may expect this trend to occur later in life, making them more prepared and malleable to changing relational dynamics. In this sense, relational dependency is a normative expectation for aging adults and an unfamiliar and unexpected occurrence for young adults. These trends and internalized expectations seemed to create substantial guilt for chronically ill young adults.
Redefining Family with Confined Choices
The majority of participants adjusted their expectations of reproduction and family planning around their illness. The age of onset of the disease occurs between 20 and 30 years, forcing many young adults to reimagine mechanisms of reproduction or the possibility of reproduction at all. At the time of data collection, no participants had children. Many discussed their concerns with biological reproduction and the threat of passing on the disease to their children. Several participants reflected on their own journeys when thinking about this possibility. Lyle’s imagining his unborn children’s future is illustrative of many participants’ feelings. He earnestly questions his choices:
I was burdened with crohns and I thought who am I to, what kind of audacity, you know, do I have that I could bring someone into this world knowing that the chances of them having crohns is high and knowing all the shit I went through? Who am I to bring someone into this world and put that on them?
While research has substantiated a genetic component, the cause of IBD is still largely unknown (CCFA). Even so, the mere chance that Lyle passes on this illness creates apprehension. Not only does this communicate his overwhelmingly negative experiences as an individual affected by IBD, but it also communicates his perceptions of the responsibility of parenthood. Simon contemplates his competing feelings of potential guilt and hope for a fulfilled life, “I don’t wanna pass this down but at the same time, it’s like I don’t wanna rob myself of that
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experience.” In this way, chronical illness requires that young adults make very intentional decisions about family planning.
While most participants experienced similar reluctances, explanations of these feelings
were often gendered. Many women feared the physical consequences of carrying a fetus with
IBD. Some discussed their anxiety in terms of the effects their medical treatment might have on
an unborn child. Allie reflects on the information provided by her doctor, including a risk of birth
defects from treatment and an increased risk of miscarriage during flares, “I’ve come to the
conclusion that I’m strongly against having kids.” She elaborates on this discussion and
demonstrates some resentment of bodily betrayal, “my body can’t even get enough nutrients to
support myself, let alone a whole other child in me.” Similarly, Maggie, a school teacher and
lover of children, is prepared for a problematic pregnancy. She explains:
It’s going to be the worst pregnancy, like, I’m gonna be sick the entire time and that scares me. I mean I want kids but being pregnant scares me. I could be miserable for hours but I don’t know if I could be miserable for eight months.
In this sense, young women with IBD felt that pregnancy would require severe bodily
sacrifices and potentially risk the health of their babies or themselves. To navigate this
unfamiliar and difficult terrain, young women described planning their pregnancies around flare
ups and treatment regimens—something they did not observe their healthier peers doing. Kailyn
explains this loss of autonomy, “I always thought it would be like, ‘oh I’ll just get pregnant when
I get pregnant and you know, I’ll be fine.’ But, now it’s kind of like oh maybe I need to, like,
kind of time it.” Here, chronic illness interferes with seemingly natural trajectories and demands
temporal cognizance.
While women worried about the physically laborious process of reproduction, men worried about providing financial security. Young men imagined their future identities as
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primary breadwinners and financial supporters for their families, core definitions of competent fathering (Bernard 1981). They conveyed an acute awareness of the potentially compromised ability to work and provide financial benefits for their family. Rob ponders the possibilities, “am I going to be emotionally mature and financially secure enough to raise them and give them everything they need?” Adam echoes Rob’s apprehension and questions, “can I support a family? Like, what happens if I get sick?” Clearly, the imagined consequences of child rearing manifest in gendered ways. Heteronormative gender expectations informed these young people’s expected role in the family, creating particular pressures for those who are sick during child rearing years.
As a consequence, participants often redefined their expectations of family. For some, this required a fundamental paradigm shift. Many considered adoption as an opportunity to create a family^ However, this option was consistently discussed as a less-favorable alternative to biological reproduction. North American values of biological kinship and subsequent social sanctions placed upon those who adopt likely inform respondents’ less-favorable attitude toward adoption (Miall 1987). After James expresses the potential disadvantages of biological reproduction and subsequent genetic predispositions, he explains, “we’ve talked about adoption so we can navigate the hereditary thing. If it is, let’s just bypass that whole system and go for adoption.” James considers this a selfless and protective choice but simultaneously conveys some disappointment in an alternative route to family development. Simon echoes this rhetoric more overtly and communicates adoption as a clear substitute to his imagined vision of biological children. He explains, “it will be really cool if we could have our own kids, but if not we could also adopt.” Participants who consider adoption face a challenge in navigating competing desires of having biological children and protecting them from chronic illness. Here,
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important choices about family planning and development were described as being structured by illness.
Conclusion
Young adults in this study examine the ways in which their pathways to adulthood are challenged by the need for interdependent relationships. For young adults who are typically in a particularly unstable part of the life course, relationships and expectations of caretakers tend to shift between various forms of social support. Participants often imagine their peers, who are not burdened by medical debt, as being better prepared to achieve financial independence, and to a larger extent, adult status. In this way, young adults imagine financial independence as a significant rite of passage.
Participants also describe normative expectations of relationships in young adulthood and in a hookup culture; however, they describe their options and experiences as distinct from these expectations, as they often chose to limit their precariousness by engaging in more committed partnerships.
Finally, young adults’ express concerns around biological reproduction, but importantly identify it as a standardized way to create family. Again, young adults with IBD describe their options as deviating from perceived standards of family-making. While many participants describe their illness as interfering with their family plans, it seems that cultural norms of biological reproduction also structure their perception of limited options. As these findings suggest, young adults illustrate the inflexible standards of normative pathways to adulthood and identify their illness and the larger institutions they are situated within as limiting their ability to participate in perceivably expected routes to adulthood.
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CHAPTER V
IT’S A BUSINESS, NOT A SERVICE: HOW PRIVATIZED CARE SHAPES OPPORTUNITIES AND IDENTITY
Overview
This chapter investigates young adults with IBD’s experiences as it relates to social, cultural, and financial costs of private healthcare. Specifically, I analyze how the intersection of age and illness seem to shape young adults’ interactions with healthcare professionals and the healthcare system as a larger institution. It is important to note that all participants in this study received private health insurance, either directly through employers or indirectly through parents. This chapter provides an overview of the consequences of intersecting identities in a privatized healthcare system, which raises questions about choice in the economic and cultural contexts participants live within.
Drugs, Sex, and IBD
Very often, participants explained cultural assumptions of physical health in young adults. This seemed to be such a deep-rooted expectation that participants felt as if the symptoms they experienced were often believed to be acute rather than chronic. This assumption places young people with chronic illness in peculiar social positions, especially within healthcare systems. Participants described some healthcare professionals as overlooking the possibility of chronicity, even when they had symptoms that actively violated the nature of acute illness. While it is true that most chronic illnesses show up at later ages, this fact should not rule-out young bodies as potential sites for chronic illness (Prasad 2011). Young adults in this study described several instances in which they felt healthcare professionals dismissed the severity of their pain or symptoms, perceivably because of their age.
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When faced with patient complaints, participants suspected that healthcare professionals attributed their symptoms to activities and behaviors presumably associated with young people. Some of these associations included drug consumption, eating disorders, and sexual activity. For others, healthcare professionals minimized their concerns by suggesting they were results of anxiety-induced reactions to bodily changes. Participants felt judged as a result of these interactions. For example, Kailyn remembers going to her undergraduate school’s health center during a medical emergency and feeling as though her health concerns were not met with the seriousness they demanded. Instead, Kailyn felt that those who were supposed to assist her actually interrogated her with questions about drug consumption, and in essence, made her feel that she was being accused of illicit drug use. Not only does this reaction undermine Kailyn’s perspective and communicate distrust, but it also reduces the possibility of a proper diagnosis and subsequent care.
For Vivian, these kinds of reactions ended up delaying her diagnosis of Crohn’s disease. Despite Vivian attending several doctors and describing symptoms consistent with IBD, she felt doctors often reduced her suffering to cultural explanations of age, gender, and mental illness. She explains, “my mom would drag me to the doctors and they were just like ‘oh you’re a perfectionist, you’re just high strung, you’re a teenage girl. It’s just anxiety.’” When Vivian could no longer attend school, and had lost a third of her body weight, she returned to the doctor, only to leave with a diagnosis of anorexia nervosa. Vivian reflects on this experience as evidence of physician bias, “You know, old, white, male doctors kind of have a tendency to disregard young women. I don’t know, I just think women are generally not taken as seriously especially if they’re teenaged.” Here, Vivian directly relates her experiences in healthcare to her intersectional identity as a young woman with a chronic illness. She importantly notes that women and young
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people’s medical concerns are undermined by some healthcare professional’s prejudice surrounding age and gender. Thus, young women with IBD, and chronic illness more generally, might feel that their care is contaminated by detrimental physician biases.
Mariah described similar experiences. When Mariah began experiencing symptoms at 16 years old, she communicated her concerns to a gastroenterologist and was immediately asked if she had been engaging in anal sex. While this may be a relevant and valid inquiry, Mariah felt her symptoms were not taken seriously. Instead, Mariah felt this inquiry reduced her experiences and identity to a sexually active teenage girl. Mariah recalls feeling discredited and humiliated by this conversation, which influenced her feelings and future interactions with this doctor.
In each of these instances, young women felt that their concerns were either overlooked or delegitimized by healthcare professionals. Although we cannot know the intent of the physicians who may have been trying to assess the socio-developmental components of symptoms, they seem to have been ineffective at doing so in a way that validated the experiences of young patients and instead left them feeling distrusted, dramatic, or embarrassed.
Is it covered?
Beyond individual experiences with providers, young adults expressed disbelief and resentment toward the cost of healthcare. Young adulthood is often a time of decreased financial security, especially for millennials who have been burdened with the consequences of the recession, making stable employment difficult to achieve (Milkman 2017). With education costs higher than ever before, those represented in this study experienced extraordinary financial burdens. All participants had private healthcare insurance and each described the challenges of absorbing some of the cost of their care. This is consistent with three-quarters of insured Americans between 20 and 65 who cannot afford their medical bills (Santhanam 2018).
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Unfortunately, this is an added cost to young adults who are in the most unpredictable, transient, and turbulent part of the life course and who are less likely to have secure employment, consistent incomes, and employee benefits (Fussell and Furstenberg 2005). However, this is a unique juncture in which young adults often rely on their parents’ health insurance. Facing a high share of insurance costs, participants felt victimized by the United States’ healthcare system and found it to be excessively costly.
Many participants felt that healthcare providers, pharmaceutical companies, and hospitals prioritized profit over health and wellness. Participants typically reported spending thousands of dollars out of pocket each year to remain treated and healthy. When discussing this point, participants typically referred to excessive financial costs of healthcare. Lindsey encapsulates these thoughts:
I think it is a business, it’s not a service. And it needs to be a service. Healthcare and the healthcare industry need to be serving people who are sick. I spend 15,000 dollars a year on medical stuff for UC. 15,000 dollars! My take home income is 30,000 a year because I spent 15,000 on medical stuff. The fact that I have to spend so much money on stuff that just keeps me healthy, it just blows my damn mind.
Lindsey’s experience is consistent and representative of many participants who expressed astonishment at the cost of their prescriptions, hospital visits, and infusions. Oftentimes, participants did not perceive the cost of treatment as commensurate with the care they received. Rob’s $60,000-week hospital stay resulted in substantial medical debt. But, when he reflects on the services he received, he recalls that he was mostly watching TV, getting his vitals checked, and receiving “hospital-grade Tylenol.” For Rob, the cost of the visit seemed disproportionate to the services he received, especially considering the subsequent $10,000 debt imposed upon him. He resentfully ponders the high cost of his hospital stay as an insured person and asks, “like, why do I have health insurance?”
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Others described financial burdens as exceptionally egregious when considering the uncontrollable and preexisting nature of the disease. Unlike other chronic diseases like type-2 diabetes, obesity, or cardiac disease, participants described themselves as passive victims whose disease had been inflicted upon them. Using this narrative, many participants positioned themselves as people who were worthy of affordable care. Vivian expresses anger about the cost of IBD treatment because of this, “It [the cost of healthcare] makes me so angry because it’s not my fault that I have Crohn’s disease, it’s just the way it is. That’s my body.” In this context, Vivian asserts herself as entitled to affordable care because of the uncontrollable nature of her condition.
Most participants described treatment options and, to an extent, their health as dependent on insurance and financial resources. The seemingly inextricable relationship of treatment and financial resources was particularly problematic for many participants. Adam illustrates the consequences of this system. After his dad lost his job and subsequent health insurance, Adam recalls refusing to seek medical care to avoid exorbitant medical expenses as an uninsured sick person. In retrospect, he believes that had he sought care with a doctor, he may have been able to avoid several health issues later; however, without insurance to absorb some of the cost, Adam did not seek professional care and instead managed his symptoms privately. When Adam felt he could no longer survive without being seen by a healthcare professional, his parents acquired medical debt exceeding $100,000 in a single year, a number he describes as “crazy.”
Some felt so burdened by medical expenses that they considered moving to countries they perceived as better and less expensive alternatives. After discussing Vivian’s inability to achieve financial independence, she identified the U.S healthcare system as responsible for her
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continued dependence on her parents. Consequently, she considered moving to Canada, which
has a universal, publicly-funded healthcare system, as an option to alleviate the expense of care.
Similarly, Allie compared her experiences with U.S healthcare system to her previous
experience living in Austria, which has a two-tier healthcare system primarily dominated by
publicly funded care. After comparing these experiences, she considered relocating to another
country with a presumably better healthcare system:
And I think if the American healthcare system gets bad enough, you know, it would suck to leave my family to leave all the ties I built here, but I would just pack up and go to Scotland or I’d go to London.
In these instances, participants identify countries with primarily public healthcare systems as better options for chronically ill people who acquire overwhelming medical debt in a primarily privatized system.
Max experienced similar frustrations with what he defined as a for-profit healthcare
system. After spending a week in the hospital due to a severe flare, Max and his doctors decided
he needed to be put on a commonly used biologic called Remicade or Infliximab. Typically, this
treatment transition denotes a fundamental shift in the progression of the disease, marking a time
when the disease is no longer responding to oral medicines that require less time, money, and
physical investments. As a result, Max extensively researched the history, mechanisms, and side
effects of Remicade. After Max’s first infusion, he discovered that the hospital administered the
generic version of this drug. This distinction was important to Max, especially considering
Remicade had been on the market since 1998 and the generic version only since 2016. He
describes his frustration with the reasons for this unexpected change:
It turns out that that drug is better for the hospital’s formulary, the hospital’s insurance. It’s cheaper. So, that’s what they gave me, and at that moment I just broke. Right? Like, my whole mind was just like, “what is this?” Like, I was just so livid.
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Max’s experience of receiving a generic medication suggested to him that the hospital is beholden to insurance coverage requirements, which he sees as dominating treatment decisions.
As a result, Max felt his care was based on the hospital’s financial wellbeing rather than his physical wellbeing. He reflects, “there’s not a conversation. It’s just like, ‘this is what we’re covering now.’” Max felt frustrated that his efforts to research his healthcare options and become an informed patient were undermined by the demands of hospital bureaucracy. Worse, he felt like his agency came second to the hospital’s ability to meet their bottom line, robbing him of the ability to make decisions affecting his body, health, and future. Noting how the lack of consultation about the medication made him feel undermined as an active participant in his own care, he explains, “I do not appreciate being treated like I am not a part of the conversation about my body.” Sierra explains similar feelings after noticing missing pills from her prescription and being told that her insurance was only continuing to cover a certain amount. Like Max, she felt deprived of important information about her treatment and reflects, “well, that would would’ve been nice to know.”
As these examples illustrate, many young adults describe the deprivation of agency in the perceived context of costly and profit-motivated healthcare. Participants describe compromised autonomy in terms of how their money is spent, if and how they should seek care, and how their treatment options are dependent upon larger structures outside of their personal control.
The Cost of Being Young
Chronically ill young adults often felt their choices were further limited by their inexperience in navigating healthcare systems during the most transient part of the life course. Participants describe their experiences as being complicated by this variability. Specifically,
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young adults with IBD consider how limited financial resources in college and student debt further challenged their ability to manage their illness.
Simon discusses the difficulty in managing his time as a graduate student and as a chronically ill person who requires insurance. Despite feeling that he had limited time and energy to work and manage a full-time internship, Simon worked a full-time job to ensure coverage. Even with insurance coverage, Simon experienced financial stress. He explains, “insurance for me is going to be about 400 dollars a month, which is pretty pricey cause, you know, I’m still in school and that kind of stuff.” For Simon, the share of cost of private employment-based insurance absorbed the little time and financial resources he had as a graduate student and unpaid intern. Not having insurance was not an option, but the cost of insurance along with the costs of school and an internship added stress. Like Simon, many young adults aim to balance school, internships, and work to make insurance possible.
Allie’s story demonstrates how the lack of financial resources some college students experience is exacerbated by the added burden of informal costs related to treatment. In addition to expensive medications and treatment, she describes the additional, and less visible, cost of having IBD as an indigent college student without a car, “I am spending a lot more money, not just on medication, but also on getting to and from the hospital.” For under-resourced college students, seemingly insignificant costs like transportation proved to be detrimental to Allie’s economic health. Allie later explained that the cost of transportation would not feel as overwhelming if the cost of medication were reduced.
Kailyn also describes exacerbated financial burdens as a chronically ill student. When Kailyn decided to move out of state for law school, she encountered several problems with her insurance covering her treatment, which was prescribed by a doctor in another state. Without
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coverage, Kailyn’s Remicade would cost $20,000 for a single infusion. Kailyn did not have adequate resources to cover this expensive treatment and feared that missing an infusion would result in hospitalization, ultimately increasing medical debt and school-related stress. She explains how navigating the healthcare system as a student was especially stressful, “I kept crying on the phone with all these people [insurance companies] just being like, ‘I don’t have time for this, I’m studying for the bar, I’m already stressed, [and] I’m going to get so sick without this.’” Kailyn’s experience as a young, financially insecure student and inexperienced consumer in a complex healthcare system demonstrates how these compounding factors place young adults with chronic illness in especially vulnerable positions.
For others, their former status as students continued to threaten their economic lives. Although Riley was no longer a student, he still experienced financial burdens from his education. Student debt combined with the cost of his medical treatment complicated the process of achieving financial independence. As a young adult and new employee, Riley’s income totaled $35,000 before taxes. Despite his insurance covering most of his treatment, Riley paid $220 every six-weeks for each of his infusions and at the same time had to repay student loans in monthly increments. Riley describes how his meager salary as a junior employee was stretched as a consequence of medical expenses and educational debt.
This financial stress is representative of other participants who describe how modest incomes, often a product of their status as new employees, are further compromised by the combination of medical and educational debt. In this way, financial circumstances and expenses that are common in young adulthood, including meager incomes and student loan repayment, prove to be especially detrimental for those who regularly require costly treatments. Perhaps worse, Riley identifies the combination of these financial burdens as impeding on his ability to
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achieve financial independence. He regrettably mentions financial support from his dad, “even now when I go home, he’ll ask me like are there any bills you want me to help you pay and I feel bad but like it’s kinda nice to get the help.”
Confined Benefits
Over half of U.S citizens have private insurance provided by employers (Berchick, Hood,
and Barnett 2018). This dynamic theoretically binds workers to their employer, making access to
care dependent upon the company in which one works to keep insurance. In this context,
working secures access to more affordable care for most workers and their families in the United
States. Thus, individuals who rely on company-provided health insurance are certainly
incentivized by the benefits their workplace enables them to have. All participants who did not
receive coverage from their parents’ insurance relied on employment-based healthcare. As a
consequence of their reliance on employment for insurance, participants described feeling a
reduced ability to experiment with various social roles and positions in young adulthood.
Participants also described how their need for employment-based insurance influenced their
decision about meaningful life decisions, like career choices. For example, Eli, a mechanical
engineer, describes how his choices have been motivated by the need for insurance:
By being bound to employment for insurance, I’m missing out on just doing whatever I want to do, which has always been kind of like bum around, do odd jobs, kind of be like a snowboard-bum-type-of-thing, hang in the mountains, [and] work here or there.
The activities Eli describes are typically performed by young adults who are privileged with the physical ability to participate and the financial flexibility that good health allows. This kind of lifestyle can be understood as a part of identity formation that occurs in the less-standardized and protracted period between adolescence and adulthood (Settersten and Ray 2010). When he describes missing out on these opportunities, he references how his peers are afforded the chance
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to explore various lifestyle options. In contrast, Eli understands his options as restricted and largely determined by his confinement to employment and the insurance he is provided because of it.
Rob reflects this sentiment but feels particularly denied of the ability to explore various career opportunities. Now more than ever, young adulthood is culturally recognized as a time to experiment with one’s passions and explore various careers and social roles (Arnett 2000). Exploring diverse opportunities after college enables young adults to make intentional and informed decisions about their life, which helps them to arrive in jobs in which they can feel fulfilled and satisfied (Murphy et al. 2010). However, Rob, a 25-year-old truck driver, felt denied of the opportunity to investigate different career paths because his current employer provided him with adequate health benefits. He feared that if he left his job and had a gap in employment or wanted to try a different job that did not provide employees with insurance, he would experience severe health consequences. He explains, “I don’t have the freedom to just be like, ‘you know what? I’m not going to do this job anymore.’”
After asking Rob why he feels this sense of restrained freedom, he responded, “I need insurance now. I can’t be like, hey, you know, I quit, Em going to try something else.’” Here, Rob and Eli explain that being tied to employment for health insurance denied them of opportunities to explore alternative lives or take professional chances. In a way, this dependence on insurance reduces chronically ill young adults’ ability to explore various social roles with more diverse combinations of statuses, which is now considered a cultural process in emerging adulthood (Arnett 2004). As Rob eloquently states, “thinking about it, it feels like I’m a little trapped.”
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For participants who had access to health insurance on their parents’ policies, they were aware that after they turn 26 years old, they will age out of eligibility (AC A 2010). Those participants too felt hurried to obtain employment that offered benefits before aging out of their parent’s insurance. Angela discusses her fears around finding insurance independent from that of her parents, “I feel like it’s a rush to do it before the laws change or before I become 26.” These feelings influenced how Angela structured her life in young adulthood. Instead of taking time off in between undergraduate and graduate school, Angela decided to go to graduate school immediately following her bachelor’s degree. From Angela’s perspective, obtaining a higher level of education would help her to secure a job with health benefits. In this way, the age limit on dependent coverage helped shape how young adults like Angela spend time in young adulthood, which was often devoted to taking the seemingly necessary steps to ensure independent coverage.
Libby, despite being only 18 years old, echoed many of Angela’s concerns and described feeling similarly stressed about securing independent coverage. She explains, “It’s definitely scary. It’s stressful cause I need to find a job that has healthcare once I turn 25.” Libby planned her life according to this necessity, but felt that having to think about her life in these terms accelerated the process to adulthood. These feelings seemed to be especially prominent when she compared herself to her peers. She explains, “It kind of sucks that I have to think about that when other people don’t have to think about that for at least another seven to ten years, but I have to think about it now.” For several participants, anxieties about securing independent coverage seemed to influence their plans in young adulthood.
For others, more general anxieties about maintaining adequate coverage influenced decisions about future careers. Participants who felt that long term management of their illness
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required health insurance often felt obliged to train for careers that would be most likely to provide coverage, rather than training for careers that they were passionate about or interested in. Lyle discusses how this influenced his decision to choose an accounting major, “One of the driving driving factors that I wanted to be an accountant was because my dad is an accountant and he has really good health insurance.” He elaborates on this thought, “They (accountants) can always find a job doing accounting work, working at a company somewhere, get health insurance, and be covered.” This perception motivates one of Lyle’s major life decisions to pursue an accounting degree, even if he does not describe it as the one that most excites him.
Similar to Lyle, Adam explains how the need to be covered influenced a significant change in his career plans. The importance of coverage initiated Adam’s transition from a history major and ski instructor to a more dedicated and diligent student in an economics department. Adam describes this as an intentional decision driven by his hopes to gain the experience and qualifications required to obtain a financially secure position with health benefits. Kailyn also identifies certain aspirations as unfeasible in the context of employment-based healthcare. She reflects on how insurance can dominate career decisions, “I think it impacts a lot of your decisions that you wouldn’t think about elsewise, like in terms of what jobs you could have.
Like, I couldn’t be an artist, you know?” Like Lyle and Adam, Kailyn calculates health insurance as a major factor in choosing her career. Eli, who already has a position as a benefitted employee, expresses his interest in entrepreneurship and startup companies but quickly admits that he doesn’t feel he can pursue these interests because he is a person who requires health insurance.
These stories illustrate how the need for employment-based insurance impedes on sick individual’s ability to indulge in their passions and fulfill their aspirations to be ski instructors,
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historians, artists, or entrepreneurs. Instead, young adults with chronic illness seem to base their training and career decisions on the jobs they believe would offer the most comprehensive health insurance. In this way, young adults’ lives are not necessarily structured by the consequences of their illness; rather, their lives are structured around making healthcare affordable through employment-based insurance.
Conclusion
This chapter examines young adults’ interactions with healthcare professionals and the healthcare system more broadly. Generally, young adults convey feelings of powerlessness as they face healthcare professionals who dismiss their complaints, extra economic demands that their healthier peers don’t face, and treatments that can be devastatingly expensive. Participants make claims that underscore how their social position as chronically ill young adults in the current economic and cultural contexts limit their ability to participate in self-exploration. They describe employment-based healthcare, costly medical expenses, and the necessity for coverage as impeding on their ability to occupy various social roles, including occupations that align with their passions. As a result, participants chose traditionally stable professions and found ways to guarantee health insurance, even when this meant becoming anchored to fixed spaces in time— something they perceived as inconsistent with healthier young adults’ experiences.
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CHAPTER VI
CONCLUSION: WHERE WE ARE AND WHERE WE CAN GO Summarizing the Data
Despite less standardized and elongated pathways to adulthood in recent decades, participants in this study continued to communicate normative expectations that define these transitions, sometimes in the context of their failure to achieve these standards. Descriptions of perceivably normal ways to transition and achieve adult status communicate how participants have internalized powerful social expectations. Young adults’ definitions of normality were often informed by a variety of social and cultural structures and institutions. Participants’ perceptions of normativity were commonly reinforced by people operating within the institutions they felt required to interact with and immerse themselves within to successfully transition to adulthood. As a consequence, many participants described their experiences, and to an extent, their identities as distinct from perceivably normal processes and cultural expectations in young adulthood.
Education
Young adults described the social importance of attending higher education, but importantly expressed a distinction between attending college and attending college in the perceivably “right” way. Merely attending college did not fulfill these expectations. Rather, participants communicated important ways to conduct themselves and participate in college culture. Formal expectations included attending a four-year university and living in on-campus dormitories, while behavioral expectations included participating in drinking and hookup culture. Participants often considered their experiences with chronic illness combined with limiting cultural standards and expectations as interfering with their ability to assume these seemingly
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predetermined social positions. Many received detached, unsympathetic, and bureaucratic responses when they were in need of accommodations. These responses ranged from educator’s skepticism of absences to university’s denying tuition reimbursement after medical emergencies prevented attendance.
Family and Relationships
Relationally, young adults continued to rely on their parents for financial and emotional support but also desired independence. This process proved to be complicated for financially insecure young adults who required costly medical treatments. While participants defined financial and emotional independence as an important marker of adulthood, they often felt that their illness and the support they required because of it impeded on their ability to achieve this goal. In attempts to accomplish independence, participants commonly sought participation in intimate relationships. However, they described this process as distinct from their peers who engaged in sexual frivolity, non-committal relationships, and hookup culture. Cultural expectations of heightened sexuality, healthiness, and activeness in young adulthood deviated from participants’ experiences as sick people whose health compromised their ability to be sexually and physically active. Family and peers often reacted to participants’ inability to achieve independence or engage in cultural rites of passage in seemingly insensitive ways, which often resulted in guilt and humiliation.
Employment
Participants commonly described themselves as less-experienced and less-established employees within the companies they worked for. Typically, this was a direct consequence of their age and the limited time they had to accrue professional experience. This inexperience often became problematic for sick young adults who needed time off for medical purposes including
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hospitalizations, doctor’s appointments, treatments, and general symptom management. Without experience negotiating accommodations, participants often felt insecure taking time off, especially compared to their seemingly healthy peers who did not require these same accommodations. Superiors and colleagues regularly responded to participants’ needs in unsupportive ways, ranging from colleague’s judgmental and cruel comments to superiors requesting participants work in spite of their health needs. Here, young adults felt embarrassed by their condition and often felt their needs were undermined by the pressure to work.
Healthcare
In terms of healthcare, many young adults felt dismissed by healthcare providers as young people. This dismissal often resulted in wrong diagnoses, prolonging participants’ pathway to treatment and health. Participants describe healthcare professionals’ ageist tendencies as discrediting and sometimes humiliating. Once in the healthcare system, young adults described exorbitant healthcare costs as impeding on their ability to secure financial independence, and subsequently, achieve adult status. The combination of student debt and medical costs for young adults with meager salaries often derailed their economic health. While participants described employment-based insurance as a helpful resource to alleviate these financial burdens, they also described being bound to employment as effectively disrupting their agency to explore various social roles and positions. In this way, participants imagined their healthier peers explored the world in ways restricted to them. These experiences often included international travel and the exploration of various careers and jobs. Here, medical costs and reliance on private insurance made participants feel a restricted sense of agency.
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Discussing the Covert
As the data suggest, participants often changed their plans and redefined their identities according to their experiences living with a chronic illness. While many young adults described these challenges and subsequent changes in the context of their illness, I argue that young adults felt compelled to redefine their experiences and identities based on the institutions and structures they lived within. I suggest that many challenges they described were not necessarily a product of their condition but a consequence of institutional, structural, and cultural expectations and feedback. The people who participants felt were insensitive, critical, and unaccommodating were also conditioned by the structures they operated within. IBD does not inherently deny young adults of the ability to participate in the activities and goals they felt deprived of participating in and achieving. Rather, unrealistic cultural expectations and rigid bureaucratic standards and institutions defined these experiences. Several examples provide evidence for this claim.
For example, IBD does not inherently prevent individuals from achieving the title of valedictorian or attending prom. Nor does IBD cause tuition payments for unattended semesters. Rather, bureaucratic and intuitional standards within educational institutions decide these fates and defined these experiences for young adults. Bodily changes, including weight loss and weight gain, do not cause innate shame, but body norms deeply impressed within U.S culture communicate expectations of a normal body and result in bodily resentment. Similarly, the failure to achieve financial independence is not symptom of IBD. Financial insecurity, rather, is often a consequence of medical costs that sick individuals with private insurance are burdened to bear. In this way, the cost of medical treatment shapes participants and their family’s financial lives, and sometimes, life trajectories. IBD itself does not take away young adults’ ability to explore various careers and social roles; instead, employment-based insurance and the necessity
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for this insurance in a primarily privatized healthcare system confined participants to positions that offered these benefits. And, attending work while sick is not an inherent drive, nor is supervisors and colleagues’ insensitive responses natural or instinctual. Rather, these responses are shaped by capitalistic regulations and American work cultures that drive workers to maximize production by working consistent and long hours, even in times of ill health.
Dominant American cultural expectations also proved to inform young adults’ experiences. Feelings of isolation are often social consequences informed by larger cultural expectations and pressures to be active, sexual, and good-looking in young adulthood. Cultural expectations and values of parenthood also informed participants’ feelings of guilt and exclusion. But, I argue that IBD does not influence young adults’ disappointment around adopting children. Rather this disappointment can be recognized as a product of cultural values attached to biological reproduction.
Importantly, these expectations and the perceived failure to meet them were structured by time and place. Normative expectations of when people should get an education, become financially independent, or have children influenced the ways that participants perceived themselves and their experiences in relation to these time-sensitive standards. Idealized expectations of young adulthood informed participants’ perceptions of themselves and others, often creating a very restrictive standard to achieve. Furthermore, this data cannot be divorced from today’s economic context in which millennials experience additional barriers to attaining employment, with more educated people underemployed than ever before (Milkman 2017). Additionally, the significant increase in cost of private education and healthcare proved to be detrimental to some participants’ expected trajectory.
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These examples underscore the flawed and problematic nature of the structures and institutions that govern the lives of sick people. In these terms, the actual nature of illness becomes less relevant than the social consequences of it, meaning these findings extend beyond those who have IBD and likely apply to other young adults with chronic illnesses who navigate these same institutions and live within similar cultural boundaries.
What Can We Learn and Where We Should Go
It is clear that meaningful changes must be made to better accommodate young adults with chronic illness. Institutional processes and cultural norms should be shaped based on empathy and communal wellbeing. Institutions must consider the motivations behind existing policies and guidelines in order to make meaningful change. There must be a cultural shift that allows people within these institutions to recognize other’s pain and adjust expectations according to other’s experiences. Perhaps if changes were made based on principles of empathy and compassion, young adults with chronic illness would be alleviated of some of the burdens and challenges they face. Below I will provide a brief overview of political and cultural changes that could be made to make young adults’ experiences managing chronic illness easier.
Educational institutions must find a way to foster a culture of trust rather than skepticism to reduce bureaucratic and laborious processes for sick people who are often absent. Additionally, reducing the cost of school tuition would relieve young adults with chronic illness of the burden of repaying student loans while financing medical care.
Family, friends, partners, and strangers should offer young adults with chronic illness patience, sympathy, and respect. Stigma surrounding the need for caretaking and social support must be broken through cultural and educative efforts. Ideally, America’s individualist culture
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would shift to a more collective culture, reducing chronically ill young adults’ feelings of guilt for their required dependence on family.
Employers should be encouraged to provide sick employees with empathy and value them as individuals rather than resources to the companies they work for. Federal laws that ensure paid sick leave, paid time off, and vacation days would be helpful to chronically ill people who often require time off. And, FMLA should be provided to all employees, regardless of the time they’ve invested in the company they work for. This change would support chronically ill young adults who are often new employees that could require extended time away from work.
Healthcare must be reformed to become more accessible and affordable for young adults who are often under-resourced both in terms of information and finances. Perhaps, extending the age of parental coverage would help young adults feel less rushed to secure independent employment. Or, the separation of employment and health insurance might allow young adults to conduct their lives with more agency to explore various social roles and occupations. In either case, it is important that young adults receive some educational training on how to navigate complex healthcare systems and protect themselves within them.
Finally, it is important to understand the interconnectedness of these institutions. As the data demonstrate, medical costs sometimes impeded on participants’ ability to attend college or pay student loans, while the exorbitant cost of college sometimes prevented participants from successfully paying their medical bills. The relationship between employment and healthcare required that participants secure a job that provided benefits before they were no longer permitted to stay on their parents’ insurance. However, securing employment with benefits often required a college degree. As a result, financial strain was placed on affected individuals’ families and sometimes impacted their life trajectories. Obviously, this is a cyclical process
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without clearly defined starting or ending points. Thus, it is imperative that the reformation of all systems take place in order to create effective and lasting change. Clearly, these sorts of cultural and political changes necessitate more thought and detail than provided above. However, these suggestions should be taken into consideration as starting points to inform substantive changes. Limitations and Future Research
It is important to recognize the privileged social positions most of my participants occupied as middle-class white people with access to care. Evidently, this sample is not representative of all young adults with IBD but remains relevant as it communicates the challenges even well-resourced sick people face. Future research should be conducted on young adults with other chronic illnesses to evaluate the parallels and differences between this population and a broader range of chronically ill young people. This study was also limited to the experiences of 20 people and only employed in-depth interviews as a method to investigate these experiences. Future researchers should purposefully recruit diverse populations including people of color, LGBTQ+ people, and people who do not have access to formalized care. A larger sample size and mixed methodology might offer a more comprehensive depiction of these experiences. Finally, future research should more deeply consider the changes needed to be made to accommodate young people with chronic illnesses as they deserve to be heard and represented in all forms. Researchers might consider interviewing institutional actors or policy makers to better evaluate how and why systems currently exist as they do.
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APPENDIX
Interview Guide
Basic Questions and Identity:
Can you tell me a little bit about yourself?
Where are you from?
Where did you grow up? Did you graduate high school there?
How many siblings do you have?
Are you employed? If so, where/what do you do?
Where are you living now/with who?
What're some of your hobbies?
Can you describe yourself in three words? How would others describe you? What is your favorite part of yourself? And the least?
Before Onset:
Can you describe your life before you began experiencing symptoms? Probes:
Where did you live?
What was your social life like?
What kind of activities/hobbies did you participate in?
Who were you dating?
Onset:
How old were you when you began noticing symptoms? What were these symptoms? How did you feel when you first began noticing symptoms?
What did you think the problem might be?
Who was the first person you told about these symptoms?
How did you decide to seek professional care?
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How long after you noticed symptoms did you see a doctor?
How do you know this doctor? Recommendation? Family care?
Who made the appointment?
Who did you go to the doctor with?
How did you feel going into the doctor?
What was the process after you met with a doctor?
What was it like when you finally had a diagnosis?
Who was most supportive during this process?
Probes:
Who did you feel most comfortable talking to about this?
When have you wished there was more emotional support?
Treatment if continued in health care system:
What’s your relationship like with your doctor? (Do you feel understood/sympathized with?) Typically, when you go to a doctor’s appointment who goes with you?
To what degree do you make decisions with the doctor?
What’s your current treatment?
How well is that working?
How did you get to this treatment plan?
How has treatment impacted your life?
Are there things that you haven’t tried that you want to in the future?
What are some side effects of treatment?
Health care:
Based on your experiences, what do you think of the health care system?
Treatment for this disease can be expensive, how have you managed to navigate the health care system, i.e., insurance, out of pocket, etc.
Have you had financial support from parents/partners/other outside resources?
How much would you say you’ve spent out of pocket?
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How have medical expenses changed your financial standing, if at all?
What do you think would be the best way to teach young adults how to navigate the healthcare system?
After diagnosis:
IBD changes people’s lives in many ways. Can you tell me some of your feelings and thoughts about living with this illness?
What changed for you after diagnosis, if anything?
How did your activities change, if at all?
How has your social life changed, if at all?
How have your interpersonal relationships changed, if at all?
How has this illness changed your ability to be a good partner, friend, family member?
Did your sense of self change? Or how you think about yourself change? How so?
One of the things that’s come up a lot is that it impacts people’s sex lives and romantic lives. Does this ring true for you? If so, how?
What part of your life has changed the most?
Probes:
Diet?
Sex?
Physical activities?
Disclosure:
How do you decide who to tell that you have this illness? Who knows?
What times have there been that you disclosed and regretted it?
How long after you’ve met someone do you feel okay disclosing this to them?
Stigma:
Can you share any negative emotions you've experienced due to the symptoms of this disease?
Can you explain a situation that you felt particularly embarrassed by the disease? (If you were with other people, how do you think they perceived you?)
How do you recover from embarrassment?
Who do you feel most comfortable to talk to about this?
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Who do you feel the least comfortable to talk to about this?
What is the worst part about having IBD?
Management:
What’s are some of your coping mechanisms?
What’s your best coping mechanism?
Have you come to a place of acceptance?
How have you come to a place of acceptance?
What will it take to come to a place of acceptance?
Young Adulthood:
How do you define adulthood?
Would you consider yourself an adult?
How has IBD changed your path to adulthood, if at all?
What has your experience been with school/work?
End on:
Has the illness changed your ideas about having children. If so, how? How do you think this might affect future relationships, careers, or plans? Have there been any benefits or unforeseen advantages?
What would you tell others who are newly diagnosed?
Where do you hope to be in 5 years? Both personally/medically?
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Full Text

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BOWEL DISEASE by BETH E. BENN B.A., University of Northern Colorado, 2016 A thesis submitted to the Faculty of the Graduate School of the University of Colorado in pa rtial fulfillment of the requirements for the degree of Master of Arts Sociology Program 2019

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ii This thesis for the Master of Arts Degree by Beth E. Benn has been approved for the Sociology Program by Jennifer A. Reich, Chair Stacey J. Bo sick Keith W. Guzik Date: May 1 8 th , 2019

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iii Benn, Beth E. (M.A., Sociology Program) Growing Pains Thesis directed by Professor Jennifer A. Reich ABSTRACT Chronic illnesses influence, a nd sometimes, dominate the lives of affected individuals. Although prior research shows how illness various social institutions as well as interpersonal relationships, mental health, and identity, fewer studies have c ontextualized chronic illness as part of the life course, especially concerning the intersection of chronic illness and emerging adulthood. Drawing on 20 in depth interviews with young adults with Inflammatory Bowel Disease (IBD), including Ulcerative Coli tis and Crohns Disease, this study examines how those with onset of IBD between the ages of 18 and 30 years manage this invisible chronic illness in the context of emerging adulthood. Specifically, t his study considers the experiences of symptoms, diagnosi s, and treatment, and how living with a chronic disease impacts identity, opportunities, and interpersonal relationships in young adulthood. I find that IBD is incompatible with normative e xpectations of young adulthood, as many social institutions are uns uited to accommodate the needs of chronically ill young adults. Ultimately, institutions and cultural structures limit agency and opportunities for young adults living with IBD. The form and content of this abstract are approved. I recommend its publicati on. Approved: Jennifer A. Reich

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iv For Dan and Clay Conway. I love you.

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v TABLE OF CONTENTS CHAPTER I. INTRODUCTION ................................ ................................ ................................ ................................ . 1 Chronic Illness and Emerging Adulthood ................................ ................................ ......... 4 Methodology ................................ ................................ ................................ ..................... 9 II. S CHOOL OF HARD KNOCKS: CHAL L ENGES IN EDUCATIONAL INSTITUTIONS ................................ ................................ ................ 13 Missing Out and Stress Out ................................ ................................ ............................ 13 An Unexpected Road ................................ ................................ ................................ ...... 17 Chal lenges in College Dormitories ................................ ................................ ................. 19 Extracurricular Activities and Socialization ................................ ................................ ... 22 III. NOT ON OUR TIME: NEGOTATING CHRONIC ILLNESS IN THE WORKPLACE ................................ ... 28 Being the New Kid ................................ ................................ ................................ ......... 28 Disclosure ................................ ................................ ................................ ....................... 32 Un supportive Colleagu es ................................ ................................ ................................ 35 Professi onal Presentation versus Urgency ................................ ................................ ...... 38 IV. TRYING TO FIND A BALANCE : REDE F I NING FAMILY AND RELATIONSHIPS ................................ ....................... 41 I can do it and I need help ................................ ................................ ............................... 41 Relationships with a Catch ................................ ................................ .............................. 47 Redefinin g Family and Confined Choices ................................ ................................ ..... 5 4

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vi V. NOT A SERVICE : HOW PRIVATIZED CARE SHAPES OPPORTUNITIES AND IDE NTITY ................................ ................................ ............ 58 Drugs, Sex, and IBD ................................ ................................ ................................ ....... 58 Is it Covered? ................................ ................................ ................................ .................. 60 The Cost of Being Young ................................ ................................ ............................... 64 Confined Benefits ................................ ................................ ................................ ........... 67 VI . C ONCLUSION: WHERE WE ARE AND WHERE WE CAN GO ............................... 72 Summarizing the Data ................................ ................................ ................................ ............ 72 Discussing the Cove r t ................................ ................................ ................................ ............. 75 What We Can Learn and Where We Should Go ................................ ................................ .... 77 Limitations and Future Research ................................ ................................ ............................ 79 REFERENCES ................................ ................................ ................................ ...................... 80 APPENDIX ................................ ................................ ................................ ............................ 87

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1 CHAPTER ONE INTRODUCTION I got into an argument with my chemistry teacher in high school. I was like , I have to go to the bathroom , Adam Inflammatory Bowel Disease (IBD) lives under the skin and in the gut, making symptoms apparent to the body of the sufferer while remaining imperceptibl experience in chemistry class illustrates the tension between these oppositional observations. Like many young people, 17 year old Adam was unaware he was suffering from a chronic condition called Inflammatory Bowel Disease. F or months, he experienced common symptoms of IBD, including urgent and frequent bowel movements, loose and watery stools, diarrhea, rectal bleeding, reduced appetite, weight loss, fatigue, and abdominal pain (Barned et al. 2016). When these symptoms overwh elmed Adam in a public setting and his chemistry teacher dismissed his accounts of his pain, he was forced to advocate for himself and consequently was subjected to public embarrassment. Internal and socially private symptoms traveled from relative invisib experience demonstrates how chronic illness exists between the public and private. The social consequences of this disease are often structured by larger institutions and impact affected (CD), invades the lives of approximately 1.6 million Americans (Crohns and Colitis Foundation of America CCFA). IBD is cha racterized by chronic, incurable, and relapsing inflamma tion of the intestinal system. CD impacts any area of the gastrointestinal tract and UC affects the large

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2 intestine, which experiences continuous inflammation (Trindade, Ferreria, and Pinto Goveia 201 5). While CD and UC are distinct illnesses, symptoms manifest in similar ways (Saunders 2014). Symptoms typically include urgent and frequent diarrhea, bloody and mucous based stools, and severe abdominal pain (CCFA). Individuals may experience 10 to 30 bo wel movements a day and some experience incontinence as a result of the urgent nature of symptoms (CCFA). Like most chronic illnesses, affected individuals experience unexpected onset of symptoms called flare ups and periods of decreased symptom activity c alled remission. Flare ups can last days, weeks, or even months and remission might last for months or years, with considerable variation between individuals (CCFA). Like Adam, over half of new diagnoses are between the ages of 15 and 30, a time frame that is not typically associated with chronic illness (Duricova et al. 2014). Usually, discussions of chronic illness disproportionately focus on older populations whose lives are less transitional than younger adults. Older populations are more likely to hav e achieved the five main rites of passage to adulthood including, moving out of the home of origin, attaining education, securing employment, getting married, and creating family (Arnett 1997 ). In many ways, having housing, independence, relationships that might provide social support, and secure employment make managing chronic illness easier for more financially and relationally established older adults. In contrast, young adulthood is marked by turbulent life transitions, a time period that is critical t o the construction of intimate relationships, sexual self discovery, career path development, family formation, and ultimately, identity (Fussell and Furstenberg 2005). Culturally, young adults are assumed to be physically and sexually active, happy, heal thy, and working toward achieving education, employment, and financial i ndependence (Fussell and

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3 Furstenberg 2005). These expectations are ubiquitous in representations of young adulthood. Dominant American institutions, including family, healthcare, work, and education operate with the presumptions that individuals will be independent. A few examples underscore this: historically there is a cultural expectation that young adults move out of the home of origin around t he age of 18 years old ( Osgood et al. 2 005); the U.S healthcare system requires young adults secure health insurance independent than that of their parents by age 26 (American Affo rdable Care Act ACA 2010 ); the legal working age is 14 years old with most young adults acquiring full time or part time employment between the ages of 18 and 30 years (Bureau of Labor Statistics 2018); the majority of American universities encourage, and sometimes require, young adults to move out of the home of origin and into on campus dormitories. Expectations of s uccessful transition s from dependent youth to independent adulthood are pervasive, but do not represent the experiences of young adults in vulnerable populations (Osgood et al. 2005). Accordingly, these expectations may not represent those living with chro nic illness during emerging adulthood . The very consequences of chronic illness present unique physical, social, and financial burdens, making expectations for educational attainment, employment, family formation, and financial independence more challengin g for those affected (Osgood et al. 2005). In short, symptoms of IBD and the consequence of living with a chronic illness are incompatible with conventional expectations and opportunities in young adulthood. Very few studies have evaluated the intersectio n of chronic illness and young adulthood, effectively divorcing chronic illness from the important context of emerging adulthood. The paucity of this research deprives young adults of public recognition and representation, making progress, policy changes, or resources for this population less likely. Generally, d ominant

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4 American institutions fail to represent chronically ill young adults, making part of their identity fall outside of societal norms. diagnoses are to people under 30 years, invites further investigation on the lived experiences of young adults with chronic illness (Duricova et al. 2014). A sociological perspective offers a contextualized and nuanced examination of this disease; accordi ngly, young adults affected by IBD will be evaluated based on the institutions they interact with and are embedded within. This research considers the experience of symptoms, diagnosis, and treatment and how living with a chronic disease impacts identity, opportunities, and interpersonal relationships in young adulthood. Chronic Illness and Emerging Adulthood Sociologists have evaluated illness and its interaction with various social institutions (Parsons 1951; Strauss 1998; Bury 1991), interpers onal relat ionships (Charmaz 1983 ; Bury 1982), and identity (Charmaz 1983; Goffman 1963). Most well known and perhaps foundational (Varul 2010). In this vein, sickness int everyday lives including the family and the workplace, causing sick individuals to deviate from their expected role performances . However, Parson s (1951) describes this deviance as positively san ctioned or approved by the community or authority figures. Here, he describes sickness as a legitimate reason for deviation. At the same time, Parsons underscores the responsibility of sick people in which s ociety demands sick individuals get well quickly by seeking technically competent support through healthcare institutions (Williams, Calnan, and Gabe 2000). theory does not accommodate for those who are chronically ill and do not have the ability to get well quickly. Additionally, treatment for chronic illnesses do not offer absolute health

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5 restoration, making these expectations incompatible with chronic illness and sometimes impossible for the chronically ill to achieve. Chronic illness scholarship has focused on the social implications of chro nicity emphasizing biographical disruption. Bury (1983) suggests three aspects of disruption (1) taken for granted assumption and behaviors by which the onset of symptoms forces awareness of the body and often results in bodily alienation and betrayal, (2) explanatory frameworks whereby sick individuals question their biographical fate and reconstruct narratives of illness, and (3) mobilization of resources in which the chronically ill attempt to accrue cultural, financial, and medical resources, all of whi ch are dependent on positionality and context (Williams et al. 2000). meet th e demands of capitalistic economies, the family, and the social world more generally. As illness progressively absorbs time and resources, individuals become socially isolated, leading to loneliness (Charmaz 1997). Social isolation combined with the failur e to achieve normative role performances adds up to a loss of esteem and identity (Varul 2010). Charmaz (1983) recognizes living restricted lives, experiencing social isolation, being discredited, and burdening others as influencing this loss of self. She their former self 1983; Pp. 171). Discourse surrounding chronic illness is inextricably linked with stigma, as chronic il than whole persons. As a result, chronically ill people employ multiple strategies to disclose illness and manage stigma. Strategies include avoiding disclosure entirely , disclosing only when

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6 necessary, waiting to disclose until one feels close enough to recipients, and planning for disclosure with intention. Because of the stigmatizing nature of IBD, many of those affected manage disclosure by discussing their illne ss in vague terms (Thompson 2013 ). Consistent with general chronic illness literature, individuals with IBD commonly experience reduced self confidence, negative perceptions of body image, and an overall disbelief in self (Brydolf and Segesten 1996). The very nature of symptoms is often recognized as socially offensive and consequently prohibited from normative discourse. Accordingly, existing literature y of life and contributing to in creased levels of depression and anxiety ( Drossman et al. 1989; Simren et al. 2002). Very few studies of IBD contextualize these findings with literature on young adulthood. Even though the age of onset is between 15 and 30 years old, most research on IBD focus on middle 2002; Trindade et al. 2015; Drossman et al. 1989; Rubin et al. 2009). Studies that have focused and have found that young adults with IBD feel particularly embarrassed by their disease and report lower quality of life than older adults (Rubin et al. 2009; Gavrilescu et al. 20 05). However, these quantitative studies are unable to specify why, how, or the process by which young adults with IBD experience exceptional emotionality. Situating IBD as an event during a specific part of the life course, namely, the transition to adulthoo d helps to explain young ad outstanding unfavorable experiences and their process of sick role embodiment, biographic disruption, and the loss of self. Young adulthood is often recognized as a time of great health, increased activity, good looks, and professional and personal development (Saunders 2014). Young adults are expected to be

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7 healthier than teens who are still developing and healthier than older adults who have accrued more physical conditions, marking young adulthood as a time of optimal health (Bonnie et al. 2014). As a consequence, young adults often particip ate in risky behavior and occupy various social statuses ranging anywhere from child to student to professional to parent. Empirically, young adulthood is the most turbulent time for shifting statuses, as most people in between the ages of 18 and 30 make t he five major life transitions mentioned earlier (Fussell and Furstenberg 2005). However, IBD symptoms and treatment effects violate these expectations, as IBD to socialize, induces fatigue , influences severe weigh t loss caused by symptoms and weight gain as an effect of treatment , and interferes with educational and employment trajectories (Brydolf and Segesten 1996; CCFA; Moody et al. 1992). These symptoms and the social consequences of them infringe on cultural e xpectations of health, risk taking, and transitioning social statuses in young adulthood. Moreover, existing research of IBD and research on chronic illness more generally is not grounded in current historical, economic, political, or social contexts. It is important to evaluate health promotion, longer life expectancy, and higher rates of educational attainment than ever before (Fussell and Furstenberg 2005). Ad impacted by the effects of the 2008 recession, presenting unique challenges in securing employment, adjusting to adulthood, and establishin g financial security, which has proven to be especially diffi cult for vulnerable populations (Milkman 2017). dynamic and elongated processes that now mark the transition to adulthood. The process of transitioning to adulthood ha s become longer and less orderly in the last fifty years, making

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8 transition to adulthood is now marked by semi autonomy, with increased familial financial a ssistance and returns to the home of origin (Arnett 1997). Higher levels of education and later ages of marriage and reproduction also prove to lengthen this transition. However, very few studies discuss how young adults navigate their lives according to t hese cultural changes while managing chronic illness. A life course perspective offers culturally relevant perspectives when institutions these adult transitions often demand. Some research suggests that disruptions in young adulthood can actually facilitate independence, responsibility, and competence (Bosick 2014). Charmaz (1997) explains chronic illness may at one time be considered devastating but later become a p ath to developing confidence, competence, and compassion. Though, existing literature mostly fails to communicate deep understandings of how less standardized transitions influence chronically ill thway to adulthood. More research is needed to investigate the effects of chronic illness in young adulthood, with contextualization for the current historical time and place. This qualitative study is tailored to the lived experiences of young adults as they endure dual transitions that demand managing expectations of young adulthood and chronic illness. This study merges literature from life course on young adulthood and medical sociology of chronic illnesses. This thesis seeks to better understand the e xperiences of young adults with IBD and how they navigate the social world at the intersections of chronic illness and young adulthood. Methodology Sample

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9 The data for this study come from in depth interviews with 20 young adults between 18 and 30 years old who, according to self report, have a diagnosis of IBD including either to minimize risk and to remain consistent with the ages of emerging adulthood ; howev er, participants who were diagnosed before the age of 18 discussed their experiences with IBD in prior years. I did not allow for people older than 30 years old to participate in this study to capture the ages co nsistent with emerging adulthood and young a dulthood in existing literature. With IBD affecting both men and women equally, ten men and ten women participated in this study. Of these men and women, ten reported a diagnosis of CD and ten reported a diagnosis of UC. All women identified as white and two men identified as mixed race, including Spanish and White and Mexican and White. The remaining eight identified as White. The racial make up of these participants reflects the higher incidences of IBD among Caucasians (CCFA ). All participants resided in urban settings in the United States, which is also consistent with higher incidences of diagnoses occurring in urban locations in northern climates (CCFA). Age, insurance status, and educational background seemed to mark this sample as somewhat well re sourced. The aver age age of this sample was 25.2 years. All participants were insured through private health insurance companies. At the time of the interview, t hree participants held a high sch ool diploma, three had some college (which often meant they w ere currently working on their bachelors) , eleven currently in a graduate program, and three held a graduate degree . Seventeen participants identified as heterosexual, one male identified as homosexual, one female iden tified as bisexual, and another female was actively questioning her sexuality and did not define her sexual identity. At the time of data collection, five participants identified as single, 11 were in committed relationships, two

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10 were married, and two were engaged. No participants described themselves as parents. A descriptive table of participants is detailed below. Name Disease Age Education Race Adam UC 26 Some College White Angela CD 23 Bachelors/some grad school White Allie UC 22 Bachelors/some gr ad school White Tate UC 25 Bachelors White Derek UC 26 High School Diploma White Vivian CD 24 Bachelors/some grad school White James UC 30 Bachelors White Kailyn CD 24 Juris Doctorate White Eli CD 26 Bachelors White Lindsey CD 27 Bachelors/some gra d school White Lyle CD 22 Some College White Jewish Maggie UC 26 Masters White Max UC 30 PhD White Mariah CD 25 Bachelors White Libby CD 18 Some College White Rob UC 25 High School Diploma Mexican & White Riley CD 28 Bachelors Spanish & White Sierr a UC 23 High School Diploma White Simon CD 29 Bachelors/s ome grad school White Lydia UC 24 Bachelors White

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11 It is important to discuss my positionality as qualitative research relies on those who conduct it (Charmaz 2006). My identity as a young, white, identity in terms of age, race, and gender. I am also in a long term committed relationship with a young person with UC. My social position and intimate experiences observing the effects of this disease facilitated rapp ort and trust with participants. Data Collection Institutional Review Board approval was obtained prior to data collection to protect those who participated in this study. Convenience sampling was used to gain access to the individuals of interest using a variety of recruitment sites to increase a diverse and representative sample. Fliers were distributed at publicly held support groups and at the center for gastroenterology at a medical research campus, however no participants used in this study were der ived from these recruitment sites. Those who attended publicly held support groups were often older than the targeted age group for this study. As a result, participants were recruited primarily by electronic advertisements posted on Reddit and Facebook as well as from personal networks and subsequent snowball sampling. All participants, with the exception of three personal connections, initiated contact to arrange an interview after seeing information about the study. Ten interviews were conducted in pers on and ten were over the phone. Phone interviews were conducted with people living in a variety of states. For in person interviews, the participants decided the location of the interview. All interviews took place in public settings like coffee shops or r estaurants. With provided consent, every interview was recorded. Interview length varied, ranging from one hour to three hours and 14 minutes. The average interview lasted approximately an hour and a half.

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12 Interviews followed a semi structured format, emp owering participants to provide information and experiences not included in the interview guide. The interview guide changed following initial interviews and the emergence of unanticipated and significant themes. The interview guide was designed to elicit thoughtful and detailed responses, with questions about identity, symptoms, and treatment and the social consequences of these experiences. The interview guide can be found in the Appendix. After interviews were transcribed verbatim, each transcript was r ead line by line to identify themes of interest (Esterberg 2002). I employed grounded theory from a constructivist perspective and worked inductively to gather quotes according to emergent themes (Charmaz 2006). This was an iterative process and as I proce eded, categories evolved through interpretation and became more theoretical as I engaged in successive levels of analysis (Charmaz 2006). Each informant was assigned a particular color to help contextualize individual stories while sifting through large qu antities of data. Each participant was assigned a pseu donym to protect their confidentiality. During analysis, it became apparent that social institutions, both formal and informal, structure the lived experiences of young adults with IBD. The following ch apters are structured to examine the social institutions that emerged most often in interviews alongside th e contextual factors that shape d. These institutions play a pivotal role in constructing identity and opportunities during the transition to adulthood.

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13 CHAPTER II SCHOOL OF HARD KNOCKS: CHALLENGES IN EDUCATIONAL INSTITUIONS Overview The majority of young adults in this study express concern surrounding bureaucratic processes and interper sonal interactions with educational institutions and those within it. This chapter illustrates the difficulties in navigating academic and social procedures while managing a chronic s to achieving cultural and educational standards often seem to be inflexible and consequentially incompatible with their identities, abilities, and experiences. Missing out and Stressing Out Academic Stress and Increased Symptoms It started during finals and it always did. So, freshmen year, spring: flare. Sophomore, fall finals: flare. That was usually when I got flares. It was dependent on my finals season and my doctor always says that this must have been stress induced. Mariah Secondary and post s econdary education demands considerable emotional, intellectual, and time investment of students. College students report increasing levels of stress with each academic year , with tests and other evaluation system frequently identified as the culprit (Pryo r et al. 2010). Like the general population, students with IBD experience increased stress in these high pressure conditions. However, the implications of stress wear on immunosuppressed bodies in distinctive ways. IBD flare ups can be and, oftentimes, are induced by stress, making navigating academic pressure particularly important to those whose health depends upon it. Unfortunately, despite concerted efforts to alleviate stress, several participants like Mariah experienced flares in attempt to achieve a cademic success. Participants describe substantial time on studying as a necessary investment to achieve academic success and explain

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14 how efforts to spend a disproportionate amount of their time devoted to academics effectively interrupted healthy sleeping and eating habits. They understand these habits as inducing consequential flare ups. Simon explains how his goals in school derailed his health: you know it has been hard because stress is the biggest trigger, like, stress and lack of sleep are the two b iggest triggers for my system, and you know, grad school sort of and you need to get them done. And you know during finals week, it was like clockwork where you know that w eek I would have a flare up. Simon explains that he could not mitigate symptoms through meditation or any other symptom management strategies. Instead he waited for the semester to end to see his symptoms decelerate. Several participants perceived the pr esence of symptoms as correlated, and sometimes, caused by academic anxiety. Most conceptualized flare ups as inevitable in these contexts and although they described individual mitigation strategies, most like Simon waited out the term. This section il luminates the immense pressure students feel in college settings. One could attribute this anxiety to cultural or institutional emphasis on good grades. Often , good grades are described as a necessary prerequisite to employment, and more broadly, a success ful life. The Blunt Instrument of Bureaucratic Policies Academic stress is not limited to examinations and course work. In addition to time spent studying, participants describe stress as arising from various forms of uncompromising academic and institut ional policies, including financial burdens and attendance expectations. Participants often referenced how navigating bureaucratic institutions with chronic illness created new challenges to their efforts to succeed and stay healthy. Academic institution s employ various systems to ensure student attendance. Participants described hall pass systems, sign in sheets, and pop quizzes as mechanisms to evaluate student attendance. These systems are designed to provide incentive for attending class, thus failure to

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15 adhere to att endance policies These expectations are inherently incompatible with symptoms of IBD. Oftentimes, urgent and frequent bowel movements confine those with IBD to restricted living spaces, disallowing c lass attendance or for the full duration of class meetings. These attendance requirements police the bodies of students and are especially detrimental to those whose bodies hinder them from attending class. For some, symptoms demanded immediate departur e from in class settings. Several participants describe numerous departures from a single class period. Most participants identified high school teachers as particularly adherent to established school policies, requiring different symptom management strate gies. Libby explains of her experience in high school: I d wait to go to the bathroom until I got home because I didn t feel comfortable in class. That s the thing in high school, you only get a certain amount of bathroom passes and whatever, so I kinda u sed them all up and then I d tell them I have crohns and I have to go when I want to . Libby illustrates how systems like bathroom passes in high schools infringe on bodily autonomy and feelings of security, especially for those who are sick. This also com municates the power high school teacher lives. For other participants, symptoms prohib ited regular class attendance. Riley was hospitalized during the finals exam period and miss ed every exam. The community college Riley attended required that he provide documentation of his hospital stay, even after his classmates share photographs of h imself in a vulnerable position, his professors responded with what felt like an impersonal bureaucratic response that required Riley to perform ad ditional labor in a time of already compromised health. The detached natu re of these responses makes case

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16 undistinguished from other absent students whose circumstances may vary considerably from tangible, and specific circumstances of each student. Several o ther participants described how absences resulted in the loss of social opportunities or academic recognition. For example, Adam, after missing three quarters of his junior year of high school due to a severe and ongoing UC flare, wanted to attend the prom as a way of feeling socially connected. When Adam attempted to attend the high school prom, the school initially denied him the opportunity because of his excessive number of absences. This institutional policy, designed to avoid truancies but inadequate to accommodate chronic illness, nearly operated to exclude Adam from participation in a cornerstone of adolescent American culture. rules, but failed to acknowledge the soc ial and cultural deprivation Adam had already undergone as a sick and chronically absent student in high school. Vivian, a self described hard working student who attended a private high school, was admitted to the hospital during junior year and missed se veral days. Although Vivian endured supplementary challenges as a chronically ill high school student, she maintained the highest GPA in her class. Instead of celebrating this exceptional accomplishment, the principal denied her the title of Valedictorian because of her attendance record. This response communicates that obedience to institutional policies was more important than the recognition of her academic acknowledgement. It also illustrates the ways institutional policies are inadequate for accommodat ing students with chronic illness. Lack of accommodation can also prove financially costly. For example, Lyle attended an out of state four

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17 illness demanded attention. His doctor informed him that he would need to undergo surgery that required one week in the hospital, two weeks in bed, and minimal movement for four to six weeks after that. Lyle debated his ability to continue attending school and finally decided his health warran ted his full attention. Lyle sought a tuition reimbursement after having only attended school for a single week, but following several negotiations, his institution only reimbursed 75% of his out of state tuition. Again, this response might have intended t o be an objective and adequate rule for the vast majority of students, but did not seem to be fair for Lyle, whose situation could not have been anticipated. As a result, Lyle was forced to grapple with a life changing surgery and the bureaucratic process of arguing for tuition reimbursement. In these circumstances, students with IBD are deprived of security, cultural membership, and entitlements based on inflexible institutional guidelines. Perhaps most importantly, sick students with compromised energy l evels are often subject to engage in additional bureaucratic identities but rather institutional rules shape opportunities and subsequent identity formation. An Unexpected Road derailed their route to postsecondary education, ability to maintain consistent attendance, or the ectations to attend a four year university, focusing on her health senior year of high school denied her of the ability to emotionally and logistically prepare for college. In this case, Vivian decided to stay home and attend a community college instead. H ere, Vivian witnessed her vision of dorm living as a traditional college student dissipate for conditions beyond her control. She made this decision based on the idea that community college and remaining in her home of origin would provide her more support than a

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18 traditional four year institution could. s decision indicates her perception of traditional four year institutions as deficient of the resources needed to accommodate her needs as a chronically ill person. For people like Adam and Riley, ma naging IBD meant interruptions to a consistent and traditional college career. Importantly, participants describe the idealized college experience as a continuous four year experience. When Adam and Riley realized their illness prohibited them from achievi ng this standard, they felt resentful and unaccomplished. Riley attributes these interruptions to his illness: I was supposed to graduate in 2013 and ended up having to take two quarters off there because I got sick. So, I dropped out of college. It was my second time dropping out of college because of my crohns. complicate his previous self experience d similar frustrations after he transferred to a four year institution. When he could not Adam describes the difficulty in managing a serious illness while participating in perceivably normal experiences as a young adult and student. In these instances, participants express a sense of failure when they were not able to achieve an idealized ver sion of higher education trajectories. These perceptions and ultimate feelings of failure communicate both the cultural importance and status associated with a continuous educational trajectory. Others like Rob and Derek felt denied of the opportunity to attend college at all. After additional burden of student debt. Rob explains that even if he did make the decision to finance

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19 his education, full time college en rollment would impede on his ability to work full time and therefore receive health insurance. In this way, larger structures like privatized education and college for a different reason: At one point, I wanted to go to college in Arizona at a technical college for auto stomach and knowing how to take care of it on my own, or go see doctors and stuff on my own. health related resources in college settings. The actual existence of these resources seems unimportant, as this perceived defi ciency effectively dissuaded him from attending college at all. institutions. Not only does the high pressure culture of higher education institutions seem to contribute to flare induction, but students and non students alike do not perceive schools as sources of support. In fact, many participants identify schools as unsupportive places driven by bureaucratic processes and rigid institutional standards. These stories dem perceptions of educational institutions as a detriment to their health, identity, and ability to participate in normative pathways to higher education. Challenges in College Dormitories Dorm living has become a normative expectation f or traditional college students and, despite the barriers those with IBD endure within these settings, participants describe institutional living and, more broadly, college attendance as an essential feature of their experience as young adults. Kailyn repr esents these feelings when describing the desire for normalcy, and how dormitory living offers this:

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20 I guess [I decided to live in the dorms] just because I wanted to be normal. When you make friends. I achieve this sense of normalcy . A shared living space provokes serious consideration for those with IBD: if and how they will disclose their illness t o their roommates, how they will manage dietary restrictions with required dining hall meal plans, and how they will navigate limited physical space and, oftentimes, communal ifficulty in navigating dorm living with UC: W . Y hallway. I was on the top bunk, had to get off of it, grab a trash can, run to the bathroom, was really debilitating. The physical structure of the dorms, which often aim to provide bathroom access to a large number of people in a small space, obstructed quick access to a bathroom and even resulted in one participant soiling herself in the hallwa y on the way to it. The extraordinarily urgent bowel movements associated with IBD are incompatible with communal bathrooms, a cultural hallmark of dor mitory living in U.S education institutions. For students with IBD living in this context, their challen ges exceed common frustrations with community living waiting for a shower to open is not an immediate concern, but getting to the bathroom before an accident happens, and potential public humiliation, is a requirement. For students with IBD, university re quired meal plans have more serious implications than social bemoaning of unappetizing food. Meal plans often fail to accommodate the dietary restrictions that IBD demands. The limited options on dining hall menus is exacerbated for those

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21 with IBD, and red uces individual control, which sometimes means risking a flare or hunger. Kailyn illustrates this challenge: Although with medical documentation, most universities would allow students with IBD to be excused from university required meal plans, man y first year students in this study live d in unacquainted settings and had not yet established social relationships with those who live d university dining halls . The unaccommodating and limiting options in dining halls deprive d effected students of the nutrients needed to remain symptom free . Shared living spaces in educational institutions necessitate relational navigation, especially for the young adults in t his study who did not have plentiful experience living with peers before college. This process is complicated by the intersection of chronic illness in young adulthood. Similar to other chronic illnesses, those with IBD make conscious decisions about discl osing their illness, as disclosure often means communicating delegitimizing informa tion about oneself (Charmaz 2006 ). However, the choice to disclose is reduced for those who live in community settings. Libby describes this experience: I have about eight just wanted to get it out of the way. So I just told them and left it at that. cont rol the way in which disclosure occurred. Students who lived in intimate dorm environments

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22 often felt deprived of the opportunity to disguise potentially stigmatizing information, and in a sense, felt obligated to disclose their illness to strangers who be come roommates in institutional housing. The very symptoms of IBD in combination with intimate living spaces affected The added challenges of attending university as a traditional first year student is described as an e ssential investment to gain the social capital that college offers. When students like Kailyn, described above, explain their desire for normalcy, they describe their perceptions of a normative pathway to adulthood, and more broadly, the appeal of membersh ip to a culturally credited group traditional college graduates who have shared cultural experiences and consequential resources from this experience. The challenges of living in social spaces not designed for chronic illness sufferers, and the limited abi lity to socially manage information illustrate the disconnect between these goals of an idealized experience and the reality, alongside the institutional inability to support students with chronic illness. Extracurricular Activities and Socialization I ha government and I re member having a retreat where I, like , had to go lay down during the whole thing because I was in so much pain. It was just awful. Vivian Most high s chools and colleges encourage students to devote their time to extracurricular activities, based on evidence that suggests students who do so have more favorable outcomes than those who do not (NCES 1995). Participants describe participation in extracurri cular activities like student government, afterschool volunteer programs, academic clubs, and athletic organizations as an important, and to an extent, expected part of their education. However, participants with IBD describe a diminished ability to part icipate in these activities, largely a consequence of symptom management. Not only does this diminished ability

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23 set limitations on social, educational, and professional development, but students experience a loss of self in these circumstances. When sympto ms interfere with involvement in sports and clubs, individuals lose membership to a group, and consequently experience a loss of identity. Allie explains how her symptoms prohibited her from volunteering in her field, something she recognized as important to her professional and personal development: when I started this flare up I remember sitting and looking at the sign up form for this imposter because I was saying I wanted to go into education passion to educate, and to a larger degree, her identity as a fu ture educator was insincere because she could not partake in this program. Others describe symptoms of IBD as compromising their identity as high school or college athletes. Several participants had to quit varsity and club sports to focus on their health . Adam even lost the opportunity to play division one football at a well known university. In these circumstances, symptom management forces students to depart from group membership, personal, and professional development and consequently challenges studen ts to reorient perceptions of self. Adam explains how quitting football damaged his confidence. Before Vio la tin g the Normal Body

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24 Participants who experienced bodily changes, a result of symptoms or treatment effects, quickly became conscious of what constitutes a normal body. They become cognizant of their bodily distinction in the context of educational settings, often with feedback from peers or at their exclusion from customary occasions within institutions. Eli remembers being bullied in school for having a fat face from prednisone, a common steroid used to relieve flare ups. When he told his peers that his fac e was swollen from prednisone, they responded by mocking him and calling him pregnant. Max also describes the side effects of prednisone as causing him to balloon up before senior photos . For Max, this symbolic experience brought a unique consciousness t o physical changes he underwent at this time. Other participants, like Adam, describe attending the high school prom as a difficult but seemingly necessary part of the high school experience. Having lost weight from the illness, he was aware of his limitat I mean everyone f the Participants recall how they were reminded of how their bodies deviate from their seemingly normal peers in school settings. These experiences underscore the abstract existence of a normal body a nd the restrictive standards to meet it against the background of perceivably age appropriate events like prom and senior photos. Young Adult Rites of Passage: Drinking, Hooking Up, and Traveling As participants identified the kinds of traditional experie nces they imagined were part of becoming an adult, they were aware of their exclusion from them. Specifically, drinking,

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25 participating in hookup culture, and the ability to travel were referenced as key experiences in high school and college settings in wh ich they felt incapable of participating. Traditions and beliefs handed down through generations of college drinkers serve to (National Institute on Alcohol Abuse an d Alcoholism NIAA 2002). Advertisements and sales of alcohol on and near college campuses play a role in these cultural expectations (NIAAA 2002). But d espite these social pressures, o ver half of the people in this study did not drink alcohol in college be cause of symptoms or side effects of treatment. Nevertheless, they described drinking as a significant part of college culture. Maggie demonstrates the embeddedness of this expectation: g me and not drink it. like this guilty social norm. drinking i n college. Libby, a freshman in college, similarly describes the social importance of college parties by attempting to attend one amidst a severe flare. However, she explains how her to go to a college party and I had to break it to her like hey, I have to leave right now. I have to go back to rite of passage in college cultures. Others desc ribe how IBD limits their ability to participate in hookup culture, which can percent of North American college students engage in some sort of hook up experience (Garcia et al. 2010).

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26 While participants in this study are immersed in this culture and identify its existence, they often explain how their illness precludes them from p articipation. Riley explains that Crohn s has affected the way he approaches sex, it takes a lot of lik e trust with that person so if I feel like it s gonna happen that night or that date, I won t eat a lot of foods or anything like that. Riley feels com pelled to prepare for sex in ways that his healthy peers do not. This preparation and perceived necessity of trust disqualifies Riley from participating in hook up culture, which is often a spontaneous interaction with non committed partners. Many particip ants acknowledge sexual norms in college settings, but explain how their illness denies them opportunities of sexual frivolity. To this extent , hookup culture influences how young adults with IBD perceive themselves as distinct from their peers. Like sexu al frivolity, participants describe IBD as hindering their opportunities to be frivolous with their bo increasing participation in study aboard programs across the United States has created a new collegiate sociocultural expectation (Redden 2018). Participants describe their awareness of this prospect, and again, discuss the burdensome and sometimes unmanageable processes that study abroad requires. Kailyn describes the difficulty of navigating treatment in a foreign country. As she considered whether she could study abroad, she wondered about access to care: In terms of planning where I studied abroad, I had to figure out like how do I get my meds? Is there a hospital? Like, are there services I need? Wher eas, a lot of people are travel, while other college students, not bound by sickness, are presumably afforded more flexibility in their choices. Riley had to renegotiate expectations of studying abroad entirely after his failed treatment plan induced a severe flare and prevented him from realizing his plan to

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27 for six months and I and Riley represent several participants who regrettably discuss their inability to study abroad as sick people bound by precarious sympto ms and time sensitive treatment regimens. In all of these experiences, students with IBD lead restricted lives and lose the capacity to determine their own status in various forms including control over bodily appearances, participation in informal social norms, the ability to travel, and identity and group membership associated with extracurricular activities. Conclusion The additional barriers and consequential limitations students with IBD face in educational institutions has far reaching implications . Participants describe educational institutions and socialization processes embedded within them as incompatible with their expectations and trajectory as chronically ill young adults. Importantly, most young adults describe a normative pathway to achievi ng educational and social success. Participants often romanticized traditional experiences in higher education as a continuous endeavor that begins in college dormito ries and ends in four years. T hey imagine their healthier peers as being afforded with the very luxuries they feel deprived of, including participation in perceived cultural norms like hookup and drinking culture. The inflexible standards established by larger institutions and cultural structures operate to exclude young adults with IBD from th ese experiences, making them feel distinct from the larger, normative culture.

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28 Chapter III NOT ON OUR TIME: NEGOTATING CHRONIC ILLNESS IN THE WORKPLACE Overview The transition to adulthood is often defined as complete when an individual secures full ti transition into full time employment means adapting to potentially unfamiliar professional processes and cultures. Participants in this study show that this process is com plicated for young people with illnesses whose mere age limits their ability to have achieved abundant professional experience and therefore workplace seniority. M anaging chronic illness during this transition requires thoughtful navigation in terms of how to manage disclosure and potentially request expectations of working in a capitalist economy, in which professional roles and time investments in work are emphasized as an important part o f transitioning to adulthood . Being the New Kid Entering the workforce as a young adult often requires transitioning from student to professional, which can include significant emotional, personal, and professional transformations. F or many young adults who have only ever worked in casual part time positions or whose experience is limited to higher education, entering the workforce requires navigating potentially unfamiliar cultures, norms, and expectations. This can include negotiati ng accommodations and leave, which is an especially important process for sick individuals who frequently require time off of work . For young adults with chronic illness, this challenging process of learning how to manage work responsibilities is increasin gly complicated by illness.

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29 Many participants felt that their ability to prove themselves as reliable workers would be compromised if they communicate d their needs to their supervisors and colleagues. They feared they would be perceived as entitled, indol ent, or unworthy of employment by those they worked for and alongside . Young workers with chronic illness describe d an exacerbated sense of concern in proving their value as both new and sick individuals. The intersection of illness and age define the expe riences and perceptions of participants entering the workforce. Rob represent s a offer ade quate benefits to accommodate him as a chronically ill and new employee. After being hospitalized fo r a week, Rob describes his anxiety to return to work as an unestablished employee: I was more worried about my job because at the time, I was like, I already missed a week y missing then went back to work that Monday. to work only two day s after he was released from the hospital, sooner than would be advisable. As a n ew and sick employee, Rob shared a n awareness of his limited options at his company without Paid Time Off (PTO) United States, which is the only advanced economy in the world that does not guarantee workers paid vacation days or require that employers provide their employees with paid sick leave (McCarthy 2017). Unfortunately, paid vacation days are often allocated to more senior employees which is particularly problematic for Rob as a sick young adult who had invested less time in the company than that of more established employees. In the absence of paid sick leave or vacation time, Rob experi enced signific ant anxiety and worry, and tested his boundaries by making a quick return to work. Unfortunately, Rob did

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30 not m ention the Americans with Disability Act (ADA), which forbids firing discrimination of disabled employees. Although this resource e xists, it remains underutilized when potential beneficiaries are uninformed or find them inaccessible. On the other hand, the federal Family Medical Leave Act (FMLA), which provides unpaid leave with job protection once a worker has accumulated 1250 hours in a year and works for an employer with at least 50 employees with in a 75 mile r ange, does not apply to Rob as a new employee . Here, t he FMLA does not adequately protect new employe es, who are often young adults like Rob. Clearly, this is problematic for young adults and new employees with chronic illnesses. This rule, based on company seniority, denies many young adults (who are often new employees) with chronic illness legal protection in the case that they take time off because of their illness. Tate expe rienced similar anxieties despite working for a company that offers unlimited exibility, Tate still felt that in order to establish himself he must work on days he was feeling sick. When I asked why he felt this pressure he explained: Because a lot of our office is younger, no one is that sick that would warrant being away for that see that as you cheating the system. influenced his fear of judgement. The homogeneity of young people in his off ice made his experiences as a sick young adult seemingly exceptional. Tate offers an important perspective by explaining the cultural assumption that young pe ople are mostly healthy and seem unlikely to need extended periods of time off for health related issues. As a result, Tate felt others would inevitably presume he is healthy because of the seemingly natural relationship between age and health and assume that his absences reflect

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31 lack of responsibility or honesty. The presence of other young employees who did not often need to utilize their sick time made Tate feel that using his paid leave would make him appear as a deviant or unreliable new hire . In this context, Tate felt significant pressure to work during a flare because of his identity as a young person, and by extension a new employee. Experiencing sickness without having established seniority or a reputation as a competent worker often undermined even derail ed their opportunities for advancement. While Lindsey was ho spitalized during a severe flare, her managers directed other after returning, she was denied opportunities to demonstrate her capabilities and move ahead. She Here, Lindsey identifies her age as a factor that contributed to this loss of opportunity. Perhaps with more experience in the company, Lindsey would have retained her position and the territories she controlled within the company. Rather, at the intersection of her status as an unestablished employee and chronically ill person, Lindsey felt she had lost the ability to work autonomously and to progress within the company. She describes how this threatened her fragile Chronically ill young adults without workplace seniority observe limited benefits and opportunities. This section underscores how ch ronically ill young adults felt unaccommodated by their employer s in times of ill health and often felt forced to d efend their contribution in the workplace as both young, unestablished employees and chronically ill people.

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32 Disclosure Most participants described struggling to decide how they would disclose their illness to their employers. Navigating any new work env ironment can be an intimidating and confusing process and for young professionals with chronic illness, this process is complicated by the possible outcomes of their decision to disclose. Disclosing chronic illness means offering delegitimizing information about oneself and risking a loss of acceptance, autonomy, and opportunity (Charmaz 2006). This is especially concerning for people with IBD, as a nationally distributed survey found as many as 25 percent of employers would not continue to employ those who developed the disease (Moody et al. 1992). Young adults with chronic illness who are, sometimes, inexperienced in professional settings, must navigate difficult questions concerning disclosure. Allie explains the difficulty in deciding how much to disclos e about the disease for future job opportunities : in talking to an employer and navigating that line between telling them enough not just trying to skip work versus not grossing them out with all the gory details. Allie imagines struggling to identify the boundary between what constitutes public and private information and plans to carefully balance a line that allows her to disclo se enough information to legitimize her illness but does not inflict discomfort on recipients or herself. inexperience in professional settings makes this future decision particularly difficult. Several participants echoed this concern and electe d for vague language when discussing their symptoms in the workplace. Instead, participants referred to specific symptoms and Ambiguous language and concealment of stigmatizing details provides affected individuals

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33 control over the extent of their disclosure. This strategy can be empowering, but omitting important information in dialogue with employers also limits their ability to request and receive accommodations that can influence their quality of life. Overwhelmingly, young adults in this study felt underprepared to discuss medical information with employers and expressed feelings of n aiveté surrounding medical dialogue and accommodations with employers. Even t iming of disclosure was important for participants. Instead of disclosing their illness at the time of the job offer, several participants preferred to wait until uncontrollable symptoms necessitated disclosure, after which time they would have more experience in their jobs and with their supervisors. In th ese circumstances, disclosure was a reactive, rather than a packages, chronically ill young adults who avoid disclosing their disease may not be able to request the immediate and necessary accommodations their illness might demand. The precarious nature of IBD results in unexpected complications and oftentimes, hospitalizations. As a result, tho se who wait to disclose until an unanticipated and traumatic event sometimes reconsider their decision to delay disclosure . decision to avoid disclosure upon his hiring: I thought about that in the past coup that you have an illness. I I, you know, I certainly told them now. Max hesitantly questions if his experienc e would have been more positive if his employer had been aware of his condition prior to hospitalization. By experiencing a flare up that required hospitalization, Max was unable to immediately meet work expectations, which generated

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34 feelings of guilt. Thi s compelled him to disclos e his illness to his employer. Those who make the decision to withhold information until it is unavoidable often felt obligated to disclose in turbulent times of ill health. Many noted that having to tell employers during times th at were already challenging was time consuming and added to their stress. Sometimes, participants felt compelled to disclose because new opportunities at work presented new challenges. For example, Eli felt forced to disclose his illness, when his work re quired he move to a new state, which is not an uncommon request for young adults who make up 43 percent of all movers (Godfrey 2016). Eli proactively communicated that he needed advanced notice before his move, but in an attempt to conceal his illness, he did not directly express why he would need extra time to coordinate his relocation. Understandably, Eli would have to transfer care to a new state and locate new providers. However, his work disregarded his request for weeks and did not provide him with th e information he needed. This ultimately resulted in Eli unwillingly disclosing his illness to his employer in an effort to receive the st, the company made him feel like he had limi ted agency in controlling his personal medical information. This experience led Eli to view his company negatively and ultimately led to his resignation . He w hole experience left a huge, just terrible taste in my mouth, with the company and its policies continue to w ork for a company that overlooked the requests o f its employees. Lindsey initially delayed disclosing her disease status at work, but has since changed during the job offer process because I had learned very quickly, I am my only advocate, nobody

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35 during an unexpected medical emergency helped her to decide that disclosing at the time of the job offer would provide her with the most protection. By electing to disclose immediately, Lindsey shares feelings of self advocacy and empowerment. Perhaps more importantly, there is emotional security in having informed employers prior to an emergency. Unsupportive Colleagues When you ng adults chose to disclose their illness status, they were often frustrated or disappointed with how the information was received. Often, participants received uncompromising and insensitive responses from superiors when they requested time off or needed advanced notice to accommodate their treatments. Much like issues surrounding seniority and disclosure, many chronically ill young adults described feeling unsupported or misunderstood by superiors and peers in the workplace. Treatment for IBD sometimes m eans the administrat ion of biologics, which require intravenous infusions every four to six weeks . This process demands that affected individuals attend a clinic and wait for two to six hours while the medicine is dispensed. The immediate side effects of b iologics include severe fatigue and drowsiness, sometimes causing temporary dysfunction. Evidently, for most working people, infusion schedules require time away from work. Taking time off of work for treatment becomes more complicated for those who choose not to disclose and for those who are not already well established within the companies they work for. Undoubtedly, larger structures and economic institutions influence the reactions of employers and peers. Many participants describe receiving responses from employers or supervisors that were unaccommodating, and unsympathetic. When Adam requested time off for his treatment schedule, his supervisor recommended he reserve the weekends for medical purposes (a time at

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36 which infusion centers are closed). Thi s response angered Adam, making him feel as though his seemed to violate company commitment and common American workplace expectations of long and consist ent time investments, with the average American averaging 49 hour work weeks (Ellin 2003). Illness and vulnerability expose these unrealistic expectations and shows how those who need support often feel as though their health demands are undermined by the economic demands of the companies they work for. Chronic illness violates cultural expectations that young workers should be healthy and seems to unearth reactions are not limited to superiors. After explaining her time consuming treatment regimen to a colleague, the colleague said she to take a whole half day to go d o that could probably just take two hours and go b Not only was this response insensitive and uninformed, but it illustrates how workers internal ize U.S achievement values of productivity and that even medical t reatment should be time limited, irrespective of how one feels (Varul 2010) . Linds time hours resulted in a loss of workplace culture and its emphasis on working, producing, and money making undermi ne values of health, well being, and comm unity. These pressures are incompatible with marginalization. Social exclusion also came in the form of insensitive and stig matizing commentary from young colleagues. Tate and Lindsey made this observation in the context of work environments

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37 of immature younger people and there were esteem that she decided to quit her job after only for her departure: O ne of the big ones I remember is I got up and very quietly, left a meeting and one of my very good friends who used to work with me told me that this guy, who got these opportunities, was being a oes she seriously have to get up and shit that much? t o a room of 11 people. To my boss, his boss, and all my peers. The people laughed . T hey thought it was funny. professionally discredited he r by highlighting a particularly stigmatizing limitation to her effort to present herself as a professional. In a moral capitalistic economy, occupations often help define identity, making these kinds of comments especially (Chandrasekhar and Ghosh 2018). L indsey attributes insensitive social reaction s o f her peers to immaturity associated with younger aged people and attaches meaning to age and lack of professional experience. Noting the significance of experience, she expla ins that colleagues who were younger adults were unsupportive and detrimental to her professional development, while Tate also felt other young professionals judged him because of the nature of his symptoms. When Tate experienced an urgency issue in front of a younger colleague, his colleague laughed and asked if he had to poop. At the time, Tate laughed with his colleague but symptoms. These feelings were perceivably exacerbated by age. Similar to Lindsey, Tate

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38 describes older colleagues as more sympathet ic and younger colleagues as uncompassionate who more supportive, one can imagine that this is a product of accrued professional or life experience. In either ca se, young adults with IBD felt misunderstood, discredited, and stigmatized in the presence of other young professionals, making consistent employment and successful integration in work cultures challenging. Professional Presentation Versus Urgency Young adults described their current and future career choices as structured in relation to bathroom proximity. Many participants worried that urgent symptoms would interfere with their ability to present themselves in a professional manner. This was particularl y concerning for those whose positions required consistent social engagement, presentation, or supervision. For instance, school teachers often worried about their ability to dependably supervise a large group of minors. Maggie, a fifth grade school teache r, has employed a variety of strategies to ensure consistent supervision including texting other teachers or adminis trators to quickly come watch over her classroom. Unfortunately, Maggie explains that thi s strategy does not always work: Sometimes with co way if anything happens then hopefully that helps. Allie, who plans to become a teacher, antici pates the very issues Maggie experiences as a teacher protect a gainst these concerns, Allie considered alternative careers that require less social if

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39 Vivian expresses similar concerns when consi dering her future career as a therapist and cenario as an inevitability and, as a result , plans to be transparent with her clients. Sadly, she does not describe this plan as providing her with confidence that she will be successful in her chosen career. Instead, she imagines she deviates from professional norms of counseling and feels wise is just Others , like Libby , imagine themselves in careers that do not offer quick or easy access to a bathroom. Libby dreams of being a biomedical researcher, but she worries that collecting data outside and away from a bathroom will impede on her ability to successfully conduct her work. To protect ag ainst this possibility, Libby describes how finding an employer who offers accommodations for disability is a necessity. Young adults with IBD express anxiety surrounding their ability to experience professional success while managing stigmatizing, urgen t, and uncontr ollable symptoms. As a frame their future careers around their illness and employ a variety of strategies to mitigate potentia lly detrimental and professional consequences. Conclusion Young adults living with IBD face p articular challenges as they aim to launch their careers. At times, they experience a lack of organizational and interpersonal support from both superiors and colleagues. As a result, many participants have resigned from companies and felt misunderstood, b elittled, and excluded. Without ample experience negotiating work leave and accommodations, young adults with chronic illness often avoid disc losure. As illustrated ,

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40 avoidance has implications for likely future events that often require accommodations that could only be provided as a result of disclosure. However, when participants did disclose their illness, they were often met with unsupportive reactions from peers and superiors. These reactions seemed to derive from a variety of ageist, capitalistic, and ablest biases in the workplace. chronically ill people embedded in a country that does not guarantee paid sick leave and expects quick recoveries and returns to work. As a result, young adults often worried that they would not be successful in their future careers as sick people. Ev idently, cultural assumptions of health in ations, often resulting in

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41 CHAPTER IV TRYING TO FIND A BALANCE: REDEFINING RELATIONSHIPS AND FAMILY Overview Emerging adulthood is a unique juncture in the life course wher e young adults occupy liminal spaces in both informal and formal institutions. While young adults continue to be invested in their family of origin, they also focus on opportunities to create their own families. Cultivating and establishing substantive int imate relationships with romantic partners typically precipitates family formation (Arnett 2011). However, research shows that young adults in vulnerable populations are less likely to marry and have a family before the age of 30 (Osgood et al. 2005). This chapter evaluates how young adults with chronic illness strike a balance between seeking familial support and developing independent relationships and families. Finally, this chapter explores the complications of independent romantic relationships and fam ily formation for young adults living with IBD. I can do it and I need help Shifting Social Support Emerging adulthood is a time of transitioning social support. While families of origin provide various forms of support to young adults, young adults ar e also positioned in a social part of the life course that offers a plethora of opportunities for building relationships outside of the family of origin. To achieve a sense of independence, participants foster relationships independent from their family of origin for emotional and, sometimes, physical support. During origin, friends, and intimate partners.

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42 Participants seem ed to negotiate their social support according to their identities as young adults with a chronic illness. For many participants, this meant having considerable support from diverse social groups. Importantly, varying sources of social support do not exist in isolation to others. Many partic ipants describe d health was severely compromised. Max explains how both his mom and his girlfriend flew from out of state the week he was hospitalized to support his emotional and phys ical needs. Simi larly, Lindsey describes feelings of gratitude for the time her family, best friend, and boyfriend mom was there and she helped me for about a day and then Kelly, my roommate, S transitional period of emerging independence. independence as young adults and the necessity of familial support as chronically ill people: My dad built a studio apartment on our pr operty, so I live in the studio. S o , it's like, I feel like I have my own freedom, but I still live in the same house, s o if I need something, they can just come right in, or I can stay in the house. Here, Sierra is afforded with a semi independent living arrangement that supports her identity as a young adult and her needs as a person who suffers from IBD. Many participa nts describe semi s while attending college, intermittently moving back home, and returning to their home state after moving away for school. Those who moved out of their home state found supportive resources outside of their families. Lyle explains finding friends in a new state as a necessity for his health: friends because I needed to be social. It was like every eight weeks, I need to go the

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43 me to the hospital as a chore. While Lyle successfully moved to a new state, like many other transient y oung adults do, he anticipated requiring additional support as a chronically ill young adult in a new environment. Others similarly relied on their friends to care for them. In fact, Lindsey was diagnosed only after her friend hugged her, noticed her sever e weight loss, and took her to the hospital. However, the process to independence often begins by resisting support from family members in times of need. Kailyn recalls testing her personal boundaries in the dorms: F inding the good balance , mainly with m y mom , of her being worrie d when I would get sick but me like , so wanting that indep endence of being a freshman . Like, no you don t need to come, like I m sick, I can handle it on my own b ut also wanting to be like , I feel like I m dying, I want someone t o take care of me college. Yet, she was aware that she wanted someone to provide care for her. In instances like this, Kailyn supported herself or relied on f riends she had met in the dorms to care for her in times of need. Similarly, Lyle made a very intentional decision to undergo intestinal resection surgery in the state that he attended college rather than his hometown where his parents resided. While Lyle remain in his new college town. This was an empowering experience for Lyle. He ught support from his roommates and successfully underwent a life changing process in a space he decided to define as home. the hospital with him overnight. He

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44 required he stay in the hospital independent from his father. Others describe d partners as a sou rce of support that facilitate d their transition to and I th accompanies him to appointments, and provides emotional support. Like Simo n, many young adults who established serious long term relationships often resorted to relying on their partners rather than their parents. These shifts are marked by the process of resisting familial support and establishing relationships and security ind ependent from that of their parents. However, as shown, this process is complicated and elaborate, often marked by semi autonomy. Financial Support from Parents Chronic illness coupled with changing social, economic, and cultural contexts impact young results in long term financial burdens for those who are chronically ill (Tu 2004). Participants describe d the cumulative cost of hospitalizations, medications, and sources of financial distress. For the adults in this study who have not secured financial independence or a career that offers health insurance, economic responsibilities are often . Financial support produces competing feelings for young adults who seek independence but cannot meet the financi al obligations of managing IBD and n early all participants defined adulthood in terms of financial independence. Derek represents participant

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45 bills, working a full they could not yet identify as adults b ecause of continued financial help from their parents. of dependency on her parents: reliant on my dad because he pays the medical bills. So, like, I am reliant on him feeling dependent on him in that way still. Like other young adults, Vivian expected to establish financial independence from her parents by the time she had graduated college. However, the costs of health insurance limited her ability to finance her life independent from her parents . Sim ilar to Vivian, Allie identified costly medical treatments as an interfering with her have a credit limit that was that high. I vigorous attempt to achieve financial independence, a marker of the transition to adulthood, could not be achieved as a young adult without sufficient resources in a healthcare system that places fina ncial burdens on sick citizens. , with several participants describing feelings of gu ilt because of this. Allie suggests feeling as though her financial dependence interrupted her m

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46 especially when his parents remind ed him of the financial burden his medical care has inflicted ence navigating insurance or the means to pay for their own care continue d to rely on their parents, often creating feelings of dependency and guilt. While this financial reliance is undoubtedly shaped by the healthcare system, it is also a product of the Affordable Care Act (ACA) which made it possible for young adults to remain on care that would have otherwise been inaccessible, but it also lengthens the fin ancial interdependence between adult children and their parents. Relying on parents for financial self esteem. Even so, medical costs can be challenging for pare this role, his parents withdrew money from their retirement fund, prolonging their working years. required a fundamental change in their life trajectory. As a result, several young adults yearn for finan cial independence that they cannot achieve because of medical expenses and debt. Along with many others, Adam explains that he is most looking forward to being able to pay his own bills even if that means added financial stress. Vivian similarly imagines a

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47 Hopes for financial independence communicate the deep sense of guilt many participants harbor as you ng adults who are expected to make successful adult transitions to financial independence , but are hindered from doing so because of the costs of their illness. Relationships with a Catch Forming relationships include new challenges for young adults with UC and Crohn S ymptomatic manifestations of IBD challenge cultural norms of cleanliness and attractiveness, making IBD a particularly deviant and stigmatizing illness (Saunders 2014). Many studies underscore the consequences of this stigmatization and i llustrate that young adults, specifically , feel embarrassed, humiliated, and physically diminished by stigmatizing symptoms (Daniel 2001). Consistent with other studies, young adults identified their symptoms as shameful, especially in the context of roman tic relationships. Participants describe d symptoms, which include frequent and urgent bowel movements, loose and watery stools, rectal bleeding, incontinence, severe weight loss, and fatigue, as complicating normative expectations of attractiveness and sex uality in young adulthood. Many found these symptoms to be detrimental to their burgeoning intimate relationships. Vivian explained feel attractive, like, when you have diarrhe significan committed relationship, indicates the challenge of forming a relationship with this disease. I ve had a girlfriend the whole time since I ve been diagnosed and even a co uple years before that but if I hadn t, it d be so hard to meet someone and explain to them like , hey I m gonna be waking up at 5am to have violently loud diarrhea

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48 Feelings of unattractiveness and embarrassment commonly resulted in reduced sexual activi ty and romantic involvement. Internalizing these stigmas has serious implications for young adults in both cultural and generational contexts. In the past, young adulthood has been empirically characterized by relationship development and an increased sens e of commitment to romantic partners; however, recent studies show that relational dynamics in early adulthood are less focused on long term commitment and instead characterized by more sporadic and casual romantic encounters (Schulman and Connolly 2013). This cultural transition has delayed the average age of marriage to the latter half of the third decade of life (Schulman and Connolly 2013). This transition has implications for young people living with IBD, specifically regarding their engagement in hoo k up culture. Participants in this study did not perceive themselves as being afforded with the same privileges as their healthy peers in this regard. These young adults felt they had a very limited capacity to liberally engage in short term, casual, and unsubstantial relationships. Instead, they frequently identified their goals were to find a long term partner. For some, per ceptions that their disease would continue to worsen inspired a sense of urgency to this search. Allie, for example, explains how IB dating , informal relationships, and sexual liberty. Several participants discovered how their relational expectations were inconsistent with other young adults entrenched in this culture. Disclosing information about the disease sometimes resulted in participant s being able to detect immediate apprehension in their dates. After Sierra disclosed her illness on a date, she recalls,

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49 reluctant dating partners after disclosure p erceived this to be a consequence of age and immaturity. After Lindsey told an ex boyfriend about an upcoming infusion, he slowly stopped it in with somebody These experiences ultimately led to more conscious romantic decision making. Several participants refused to date those who expressed apprehension or remained uninterested in a long term commitment. As a conseq uence of experiencing unsupportive and perceivably immature responses, another participant, Libby, elected to date older people who she imagined could handle the information better. In this sense, having a serious illness narrowed young O thers describe the uncontrollable nature of IBD as informing relational choices. Eli ause Eli cannot c ontrol his symptoms, he requires that a potential partner be comfortable with his illness. Sierra echoes this unsympathetic reactions. As the last section indicates, many romantic interests behaved inconsistent with these prerequisites, restricting the availability of partners. Some participants resisted seeking relationships entirely because of their condition. These choices were often influenced by fears of being burdensome. This sort of internalized guilt is expressed by Adam, who has refused to commit to a serious relationship since diagnosis. He explains this thought,

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50 sign someone up for it when Adam identifies the precarious nature of IBD as especially problematic for long term relationships. He outlines his fear that the unexpected onset of symptoms could place an unanticipated encumbrance on a partner. Wh ether participants felt compelled to establish a long term relationship or avoid one entirely, they expressed expectations that tended to deviate from broader cultural trends of frequent and non committal sexual and romantic encounters. Although these exp ectations reduced romantic opportunities, they also led others to uniquely intentional and supportive relationships. O ver half of the participants in this study considered themselves to be in long term committed relationships. In a way, having a chronic il lness provided participants with an effective guide in determining the perceived worthiness of relational investment. This realization often occurred after early on interactions with their partners. Simon explains of his now wife, ionship with my wife especially since we were only dating six months. It was still a pretty fresh relationship and she was there with me the whole time, almost like a shor t cut because it was like I wanna be with this person for sure for a long time. In this way, Simon felt better prepared to identify those worthy of his time because of the seriousness of his illness. Like Simon, many participants describe d their current p artners as she describes his curiosity and questions as a comforting and honest exchange. Sometimes, after disclosure, partners shared equally vulnerable informa tion to alleviate the burden of exposure on those with IBD. Partners who were immediately receptive, curious, and accepting promoted validation which commonly precipitated successful and supportive relationships. In this way,

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51 many participants described th eir current partne rs as their primary care takers emotionally, physically, and financially. Of course, those who successfully partnered with someone also experienced challenges in their relationship. Again, normative expectations of sex and activeness see m to be incompatible with common symptoms of IBD. The very nature of symptoms influences feelings of uncleanliness and lethargy, effectively disrupting sex lives. James explains that sometimes after ly tell his wife that they could try again another night. Tate explains the risk of incontinence as effectively dissuading him from sexual go the bathroo Despite most partners expressing support, many participants felt an overwhelming sense young people. Maggie, for exampl e, explains how the combination of normative expectations of youth and desire for intimacy accumulate and result in overwhelming guilt: connection, you know? You wan Maggie goes on to explain that her guilt is not a consequence of her p Maggie internalized s ocietal expectations experienced guilt as a result of this . Tate similarly explained that a declining sex life at this part in the life course year old trapped in a 23 year heightened sexual activity in young adulthood, including in young relationships. Unfortunately,

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52 severa l participants internalized this powerful social construc tion, resulting in the exacerbation of isolation and guilt. needs. Existing literature on chronic illness demonstrates how illness often has a detrimental impact on r elationships (Drossman et al. 1989). However, relationships at this point in the life course are typically expected to be reciprocal, loving, and satisfactory (Braun et al. 2018). These competing expectations make experiencing chronic illness in young adul particularly difficult to navigate. Max and James describe themselves as having a reduced that it helps me be more of an attentive, respect ful, um not respectful but like, showy, caring in serious guilt. He solemnly While Max refers to a reduced emotional capacity, James discusses how IBD has strained sometimes just because I know she wants to get out and do things, g atherings, or activities hindered his wife from living the life she desires. However, Maggie provides a narrative that legitimizes Jame and red faces, Maggie explains her experience managing symptoms on a date with her partner: So we sit down and I started farting and I knew it wasn t just a fart and we had j ust ordered. And I looked a t Joe and was like oh my god, I need to go to the bathroom and he was like are you okay? And I was like no and I was just like , G od! S o , I threw my underwear away and I tie my sweater around my waist . I went to him and we didn t even get our food yet and I was like , I m gonna go to the car, we need to get this to go.

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53 Situations like these are not uncommon for people with IBD and going out during a flare means risking public humiliation and exposing stigmatizing information to intimate partners. Thus, man y participants describe d r emaining in the comfort of their own home as preferable. This is consistent with existing studies that suggest reduced living spaces as a consequence of symptom management (Brydolf and Segesten 1996). Unfortunately, participants s uggest that their symptoms prohibited their participation in seemingly normative expectations of dating and activeness for young couples. These social expectations do not reflect the realities of those with IBD, leaving many affected individuals feeling li ke negligent or incompetent partners. Sierra, who was on disability before her 25 th birthday, describes these feelings in terms of failure to equally contribute financially to the relationship. Considering the meager compensation that disability provide If we're ever don't have a lot of money or somethi ng one month, I'm always like, I wish I could w ork, because if I could wo rk th e n we would be okay. willingness to provide financial support. Lindsey echoes this sentiment but with emotional support. After explaining that caregivers are equall y as damaged by the disease as those who suffer from it, she explains feelings about her relationship with her partner: I feel guilty. I think a lot of people feel this way about their primary care giver but I feel like I have to watch myself so that I do As demonstrate d, chronically ill partners felt more likely to depend on partners for financial, emotional, and physical support, and, so metimes, felt less able to reciprocate support that is provided to them. Evidently, this creates guilt. Perhaps, this guilt is exacerbated for young adults who are situated in a part of the life course that is commonly identified as a time of abundant health and, subsequently, the presumable capacity to engage in reciprocal re lationships.

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54 Incidences of chronic disease rise sharply with age and are disproportionately associated with later stages of the life course (Prasad et al. 2011). Therefore, o lder adults may expect this trend to occur later in life, making them more prepare d and malleable to changing relational dynamics. In this sense, relational dependency is a normative expectation for aging adults and an unfamiliar and unexpected occurrence for young adults. These trends and internalized expectations seemed to create subs tantial guilt for chronically ill young adults. Redefining Family with Confined Choices The majority of participants adjusted their expectations of reproduction and family planning around their illness. The age of onset of the disease occurs between 20 and 30 years, forcing many young adults to reimagine mechanisms of reproduction or the possibility of reproduction at all. At the time of data collection, no participants had children. Many discussed their concerns with biological reproduction and the thre at of passing on the disease to their children. Several participants reflect ed on their own journeys when thinking about this feelings. He earnestly questions his choices: I was burdened with crohns and I thought who am I to, what kind of audacity, you know, do I have that I could bring someone into this world knowing that the chances of them having crohns is high and knowing all the shit I went through? Who am I to bring someone into this world and put that on them? While research has substantiated a genetic component, the cause of IBD is still largely unknown (CCFA ). Even so, the mere chance that Lyle passes on this illness creates apprehension. Not only does this communicate his overwhelmingly negative experiences as an individual affected by IBD, but it also communicates his perceptions of the responsibility of parenthood. Simon contemplates his competing feelings of potential guilt and hope for a fulfilled

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55 decisions about family planning. While most participants ex perienced similar reluctances, explanations of these feelings were often gendered. Many women feared the physical consequences of carrying a fetus with IBD. Some discussed their anxiety in terms of the effects their medical treatment might have on an unbo rn child. Allie reflects on the information provided by her doctor, including a risk of birth this discussion and demonstrates some resentment of lover of children, is prepared for a problematic pregnancy. She explains: scares me. I mean I want kids but being pregnant scares me. I could be miserable for onths. In this sense, young women with IBD fe l t that pregnancy wou l d require severe bodily sacrifices and potentially risk the health of their babies or themselves. To navigate this unfamiliar and difficult terrain, young women describe d planning their pr egnancies around flare up s and treatment regimens -something they did not observe their healthier peers doing. Kailyn temporal cognizance. While women worried about the physically laborious process of reproductio n, men worried about providing financial security. Young men imagined their future identities as

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56 primary breadwinners and financial supporters for their families, core definitions of competent fathering (Bernard 1981). They convey ed an acute awareness of t he potentially compromised I going to be emotionally mature and financially secure enough to raise them and give them family? Like, what happen he imagined consequences of child rearing manifest in gendered ways. Heteronormativ e gender expectations informed expected role in the family, creating particular pressures for those who are sick during child rearing years. As a consequence, participants often redefined their expectations of family. For some, this required a fundamental paradigm shift. Many considered adoption as an opp ortunity to create a family . However, this option was consistently discussed as a less favorable alternative to biological reproduction. North American values of biological kinship and subsequent social sanctions placed upon those who adopt likely inform r favorable attitude toward adoption (Miall 1987). After James expresses the potential disadvantages of biological so we can navigate the heredita some disappointment in an alternative route to family development. Simon echoes this rhetoric mor e overtly and communicates adoption as a clear substitute to his imagined vision of e in navigating competing desires of having biological children and protecting them fr om chronic illness. Here,

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57 important choices about family planning and development were described as being structured by illness. Conclusion Young adults in this study examine the ways in which their pathways to adulthood are challenged by the need for interdependent relationships. For young adults who are typically in a particularly unstable part of the life course, relationships and expectations of caretakers tend to shift between various forms of social support. Participants often imagine their peers, who are not burdened by medical debt, as being better prepared to achieve financial independence, and to a larger extent, adult status. In this way, young adults imagine financial independence as a significant rite of passage. Participants also describe normative expectations of relationships in young adulthood and in a hookup culture; however, they describe their options and experiences as distinct from these expectatio ns, as they often chose to limit their precariousness by engaging in more committed partnerships. identify it as a standardized way to create family. Again, young adul ts with IBD describe their options as deviating from perceived standards of family making. While many participants describe their illness as interfering with their family plans, it seems that cultural norms of biological reproduction also structure their perception of limited options. As these findings suggest, young adults illustrate the inflexible standards of normative pathways to adulthood and identify their illness and the larger institutions they are situated within as limiting their ability to parti cipate in perceivably expected routes to adulthood.

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58 CHAPTER V OPPORTUNITIES AND IDENTITY Overview cultural , and financial costs of private healthcare. Specifically, I analyze how the intersection of healthcare system as a larger institution. It is important to note t hat all participants in this study received private health insurance, either directly through employers or indirectly through parents. This chapter provides an overview of the consequences of intersecting identities in a privatized healthcare system, which raises questions about choice in the economic and cultural contexts participants live within. Drugs, Sex, and IBD Very often, participants explain ed cultural assumptions of physical health in yo ung adults. This seemed to be such a deep rooted expectation that participants felt as if the symptoms they experienced were often believed to be acute rather than chronic. This assumption places young people with chronic illness in peculiar social positions, especially within healthcare systems. Participants descr ibe d some healthcare professionals as overlooking the possibility of chronicity, even when they had symptoms that actively violated the nature of acute illness. While it is true that most chronic illnesses show up at later ages, this fact should not rule o ut young bodies as potential sites for chronic illness (Prasad 2011). Young adults in this study describ e d several instances in which they felt healthcare professionals dismissed the severity of their pain or symptoms, perceivably because of their age.

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59 Wh en faced with patient complaints, participants suspected th at healthcare professionals attributed their symptoms to activities and behaviors presumab ly associated with young people . Some of these associations included drug consumption, eating disorders, an d sexual activity. For others, healthcare professionals minimized their concerns by suggesting they were results of anxiety induced reactions to bodily changes. Participants felt judged as a result of these interactions. For example, Kailyn remembers going during a medical emergency and feeling as though her health concerns were not met with the seriousness they demanded. Instead, Kailyn felt that those who were supposed to assist her actually interrogated her wit h questions about drug consumption, and in essence, made her feel perspective and communicate distrust, but it also reduces the possibility of a proper diagnosis and subsequent care. Despite Vivian attending several doctors and describing symptoms consistent with IBD, she felt doctors often reduced her suffering to cultural e xplanations of age, gender, and mental illness. could no longer attend s chool, and had lost a third of her body weight, she returned to the doctor, only to leave with a diagnosis of anorexia nervosa. Vivian reflects on this experience as evidence disregard identity as a youn g woman with a chronic illnes s. She importantly notes that women and young

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60 prejudice surrounding age and gender. Thus, young women with IBD , and chronic illness more generally, might feel that their care is con taminated by detrimental physician biases. Mariah described similar experiences. When Mariah began experiencing symptoms at 16 years old, she communicated her concerns to a gastroenterologist and was immediately asked if she had been engaging in anal sex . While this may be a relevant and valid inquiry, Mariah felt her symptoms were no t taken seriously. Instead, Mariah felt this inquiry reduced her experiences and identity to a sexually active teenage girl. Mariah recalls feeling discredited and humiliated by this conversation, which influenced her feelings and future interactions with this doctor. In each of these instances, young women felt that their concerns were either overlooked or delegitimized by healthcare professionals. Although we cannot know the intent of the physicians who may have been trying to assess the socio developmental components of symptoms, they seem to have been ineffective at doing so in a way that validated the experiences of young patients and instead left them feeling distrusted, dramatic, or embarrassed. Is it covered? Beyond individual experiences with providers, young adults expressed disbelief and resentment toward the cost of healthcare. Young adulthood is often a time of decreased financial security, especially for millenni als who have been burdened with th e consequences of the recession , making stable employment difficult to achieve (Milkman 2017). With education costs higher than ever before, those represented in this study experience d extraordinary financial burdens. All participants had private healthcare insurance and each describe d the challenges of absorbing some of the cost of their care. This is consistent with three quarters of insured Americans between 20 and 65 who cannot afford their medical bills (Santhanam 2018 ).

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61 Unfortunately, this is an added cost to young adults who are in the most unpredictable, transient, and turbulent part of the life course and who are less likely to have secure employment, consistent incomes, and employee benefits (Fussell and Furstenbe rg 2005). However, t his is a share of insurance costs, participants found it to be excessively co stly. Many participants felt that healthcare providers, pharmaceutical companies, and hospitals prioritized profit over health and wellness. Participants typically reported spending thousands of dollars out of pocket each year to remain treated and healthy . When discussing this point, participants typically referred to excessive financial costs of healthcare. Lindsey encapsulates these thoughts: healthcare indust ry need to be serving people who are sick. I spend 15,000 dollars a year on medical stuff for UC. 15,000 dollars! My take home income is 30,000 a year because I spent 15,000 on medical stuff. The fact that I have to spend so much money on stuff that just k eeps me healthy, it just blows my damn mind. astonishment at the cost of their prescriptions, hospital visits, and infusions. Oftentimes, participants did not percei ve the cost of treatment as commensurate with the care they received. week hospital stay resulted in substantial medical debt. But, when he reflects on the services he received, he recalls that he was mostly watching TV, getting his vitals ch ecked, the services he received, especially considering the subsequent $10,000 debt imposed upon him. He resentfully ponders the high cost of his hospital sta

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62 Others described financial burdens as exceptionally egregious when considering the uncontrollable and preexisting nature of the disease. Unlike other chronic diseases like type 2 di abetes, obesity, or cardiac disease, participants described themselves as passive victims whose disease had been inflicted upon them. Using this narrative, many participants positioned themselves as people who were worthy of affordable care. Vivian express es anger about the cost Vivian asserts herself as entitled to affordable care because of the uncontrollable nature of her condition. Most participants described treatment options and, to an extent, their health as dependent on insurance and financial resources. The seemingly inextricable relationship of treatment and financial resources was particularly problematic for many participants. Adam illustrates the consequences of this system. After his dad lost his job and subsequent health insurance, Adam recalls refusing to seek medical care to avoid exorbitant medical expenses as an uninsured sick person. In retrospect, he believes that had he sought care with a doctor, he may have been able to avoid several health issues later; however, without insurance to absorb some of the cost, Adam did not seek professional care and instead managed his symptoms privately. When Adam felt he could no longer survive without being seen by a healthcare professional, his parents acquired Some felt so bu rdened by medical expenses that they considered moving to countries achieve financial independence, she identified the U.S healthcare system as responsible for her

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63 continued dependence on her pare nts. Consequently, she considered moving to Canada, which has a universal, publicly funded healthcare system, as an option to alleviate the expense of care. Similarly, Allie compared her experiences with U.S healthca re system to her previous experience living in Austria, which has a two tier healthcare system primarily dominated by publicly funded care. After comparing these experiences, she considered relocating to another country with a presumably better healthcare system: And I think if the American healthcare system gets bad enough, you know, it would suck to leave my family to leave all the ties I built here, but I would just pack up and go to In these instances, participants identif y countries with primarily public healthcare systems as better options for chronically ill people who acquire overwhelming medical debt in a primarily privatized system. Max experienced similar frustrations with w hat he defined as a for profit healthcare system. After spending a week in the hospital due to a severe flare, Max and his doctors decided he needed to be put on a commonly used biologic called Remicade or Infliximab. Typically, this treatment transition denotes a fundamental shift in the progress ion of the disease, marking a time when the disease is no longer responding to oral medicines that require less time, money, and physical investments. As a result, Max extensively researched the history, mechanisms, and side s first infusion, he discovered that the hospital administered the generic version of this drug. This distinction was important to Max, especially considering Remicade had been on the market since 1998 and the generic version only since 2016. He describes his frustration with the reasons for this unexpected change: I my whole

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64 beholden to insurance coverage requirements, which he sees as dominating treatment decisions. As a res althcare options and become an informed patient were undermined by the demands of hospital bureaucracy. Worse, he felt ability to make decisions affecting h is body, health, and future. Noting how the lack of consultation about the medication made him feel undermined as an active participant in his own my body. being told that her insurance was only continuing to cover a certain amount. Like Max, she felt As these examples illustrate, many young adults describe the deprivation of agency in the perceived context of costly and profit motivated healthcare. Participants describe compromised autonomy in terms of how their money is spent, if and how they should seek care, and how their treatment options are dependent upon larger structures outside of their personal control. The Cost of Being Young Chronically ill young adults often felt their choices were further lim ited by their inexperience in navigating healthcare systems during the most transient part of the life course. Participants describe their experiences as being complicated by this variability. Specifically,

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65 young adults with IBD consider how limited financ ial resources in college and student debt further challenged their ability to manage their illness. Simon discusses the difficulty in managing his time as a graduate student and as a chronically ill person who requires insurance. Despite feeling that he had limited time and energy to work and manage a full time internship, Simon worked a full time job to ensure coverage. Even with insurance coverage, Simon experienced financial stress. He explains, insurance for me is going to be about 400 dollars a mon th, which is pretty pricey caus e, you know , I m still in school and that kind of stuff. employment based insurance absorbed the little time and financial resources he had as a graduate student and unpaid intern. Not having insurance was not an option, but the cost of insurance along with the costs of school and an internship added stress. Like Simon, many young adults aim to balance school, internship s, and work to make insurance possible. how the lack of financial resources some college students experience is exacerbated by the added burden of informal costs related to treatment. In addition to expensive medications and treatment, she describes the additional, and less visible, cost of havi resourced college students, seemingly insignificant costs like transportation proved to b econo mic health. Allie later explai ned that the cost of transportation would not feel as overwhelming if the cost of medication were reduced. Kailyn also describes exacerbated financial burdens as a chronically ill student. When Kailyn decided to move out of state for law school, she encountered several problems with her insurance covering her treatment, which was prescribed by a doctor in another state. Without

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66 Kailyn did not have adequate resources to cover this expensive treatment and feared that missing an infusion would result in hospitalization, ultimately increasing medical debt and school related stress. She explains how navigating the healthcare system a I kept crying on the phone with a ll these people [insurance companies] just being like, I don t have time for this, I m studying for the bar, I m already stressed , [and] I m goi ng to get so sick without this. Kaily consumer in a complex healthcare system demonstrates how these compounding factors place young adults with chronic illness in especially vulnerable positions. For others, their fo rmer status as students continued to threaten their economic lives. Although Riley was no longer a student, he still experienced financial burdens from his education. Student debt combined with the cost of his medical treatment complicated the process of a totaled $35,000 before taxes. Despite his insurance covering most of his treatment, Riley paid $220 every six weeks for each of his infusions and at the same time had to rep ay student loans in monthly increments. Riley describes how his meager salary as a junior employee was stretched as a consequence of medical expenses and educational debt. This financial stress is representative of other participants who describe how mode st incomes, often a product of their status as new employees, are further compromised by the combination of medical and educational debt. In this way, financial circumstances and expenses that are common in young adulthood, including meager incomes and stu dent loan repayment, prove to be especially detrimental for those who regularly require costly treatments. Perhaps worse, Riley identifies the combination of these financial burdens as impeding on his ability to

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67 achieve financial independence. He regrettab even now when I go home, he ll ask me like are there any bills you want me to help you pay and I feel bad but like it s kinda nice to get the help. Confined Benefits Over half of U . S citizens have private i nsurance provided by employers (Berchick, Hood, and Barnett 2018). This dynamic theoretically binds workers to their emplo yer, making access to care dependent upon the company in which one works to keep insurance . In this context, working secures access to more affordable care f or most workers and their families in the United States. Thus, individuals who rely on company provided health insurance are certainly incentivized by the benefits their workplace enables them to have. All participants who did not re based healthcare. As a consequence of their reliance on employment for insurance, participants described feeling a reduced ability to experiment with various social roles and positions in yo ung adulthood. Participants also described how their need for employment based insurance influenced their decision about meaningful life decisions, like career choices. For example, Eli, a mechanical engineer, describes how his choices have been motivated by the need for insurance: want to do, which has always been kind of like bum around, do odd jobs, kind of be like a snowboard bum type of thing, hang in the mountains, [ and] work here or there. The activities Eli describes are typically performed by young adults who are privileged with the physical ability to participate and the financial flexibility that good health allows. This kind of lifestyle can be understood as a part of identity formation that occurs in the less standardized and protracted period between adolescence and adulthood (Settersten and Ray 2010). When he describes missing out on these opportunities, he references how his peers are afforded the chance

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68 to explore various lifestyle options. In contrast, Eli understands his options as restricted and largely determined by his confinement to employment and the insurance he is provided because of it. Rob reflects this sentiment but feels particularly denied of the ability to explore various career opportunities. Now more than ever, young adulthood is culturally recognized as a time to Exploring diverse opportunities afte r college enables young adults to make intentional and informed decisions about their life, which helps them to arrive in jobs in which they can feel fulfilled and satisfied (Murphy et al. 2010). However, Rob, a 25 year old truck driver, felt denied of th e opportunity to investigate different career paths because his current employer provided him with adequate health benefits. He feared that if he left his job and had a gap in employment or wanted to try a different job that did not provide employees with insurance, he d Rob and Eli explain that being tied to employment for health insurance denied them of opportunities to explore alternative lives or take professional chances. In a way, this dependence more diverse combinations of statuses, which is now considered a cultural process in emerging adulthood (Arnett 2004). As Rob eloquen

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69 aware that after they turn 26 years old, they will age out of eligibility (ACA 2010) . Those part icipants too felt hurried to obtain employment that offered benefits before aging out of their feelings influenced how Angela structured her life in young adulthood. Instead of taking time off in between undergraduate and graduate school, Angela decided to go to graduate school level of education would help her to secure a job with health benefits. In this way, the age limit on dependent coverage helped shape how young adults like Angela spend time in young adulthood, which w as often devoted to taking the seemingly necessary steps to ensure independent coverage. her life according to this necessity, but felt that having to think about her life in these terms accelerated the process to adulthood. Thes e feelings seemed to be especially prominent when she I t kind of sucks that I have to think about that when other people don t have to think about that for at least another seven to ten years, but I have to thi nk about it now . seemed to influence their plans in young adulthood. For others, more general anxieties about maintaining adequate coverage influenced decisions about future careers . Participants who felt that long term management of their illness

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70 required health insurance often felt obliged to train for careers that would be most likely to provide coverage, rather than training for careers that they were passionate about or interest ed in. driving driving factors that I wanted to be an accountant was because my dad is an accountant always find a job doing accounting work, working at a company somewhere, get health pursue an accounting degree, even if he does no t describe it as the one that most excites him. Similar to Lyle, Adam explains how the need to be covered influenced a significant major and ski instructor to a more dedicated and diligent student in an economics department. Adam describes this as an intentional decision driven by his hopes to gain the experience and qualifications required to obtain a financially secure position with health benefits. Kailyn al so identifies certain aspirations as unfeasible in the context of employment based healthcare. She what jobs you could have. as a major factor in choosing her career. Eli, who already has a position as a benefitted employee, expresses his interest in entrep reneurship and startup companies but quickly admits insurance. These stories illustrate how the need for employment based insurance impedes on sick ability to indulge in their passions and fulfill their aspirations to be ski instructors,

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71 historians, artists, or entrepreneurs. Instead, young adults with chronic illness seem to base their training and career decisions on the jobs they believe would offe r the most comprehensive health their illness; rather, their lives are structured around making healthcare affordable through employment based insurance. Conc lusion healthcare system more broadly. Generally, young adults convey feelings of powerlessness as they face healthcare professionals who dismiss their complaints, ext ra economic demands that make claims that underscore how their social position as chronically ill young adults in the current economic and cultural contexts limit their ability to participate in self exploration. They describe employment based healthcare, costly medical expenses, and the necessity for coverage as impeding on their ability to occupy various social roles, including occupations that align with th eir passions. As a result, participants chose traditionally stable professions and found ways to guarantee health insurance, even when this meant becoming anchored to fixed spaces in time something they perceived as inconsistent with healthier young adults

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72 CHAPTER VI CONCLUSION: WHERE WE ARE AND WHERE WE CAN GO Summarizing the Data Despite less standardized and elongated pathways to adulthood in recent decades, participants in this study continued to communicate normative expe ctations that define these transitions, sometimes in the context of their failure to achieve these standards. Descriptions of perceivably normal ways to transition and achieve adult status communicate how participants have internalized powerful social expe of normativity were commonly reinforced by people operating within the institutions they felt re quired to interact with and immerse themselves within to successfully transition to adulthood. As a consequence, many participants described their experiences, and to an extent, their identities as distinct from perceivably normal processes and cultural ex pectations in young adulthood. Education Young adults described the social importance of attending higher education, but importantly expressed a distinction between attending college and attending college in the ollege did not fulfill these expectations. Rather, participants communicated important ways to conduct themselves and participate in college culture. Formal expectations included attending a four year university and living in on campus dormitories, while b ehavioral expectations included participating in drinking and hookup culture. Participants often considered their experiences with chronic illness combined with limiting cultural standards and expectations as interfering with their ability to assume these seemingly

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73 predetermined social positions. Many received detached, unsympathetic, and bureaucratic t after medical emergencies prevented attendance. Family and Relationships Relationally, young adults continued to rely on their parents for financial and emotional support but also desired independence. This process proved to be complicated for financia lly insecure young adults who required costly medical treatments. While participants defined financial and emotional independence as an important marker of adulthood, they often felt that their illness and the support they required because of it impeded on their ability to achieve this goal. In attempts to accomplish independence, participants commonly sought participation in intimate relationships. However, they described this process as distinct from their peers who engaged in sexual frivolity, non commit tal relationships, and hookup culture. Cultural expectations of heightened sexuality, healthiness, and activeness in young adulthood deviated sexually and physically achieve independence or engage in cultural rites of passage in seemingly insensitive ways, which often resulted in guilt and humiliation. Employment Participants commonly described the mselves as less experienced and less established employees within the companies they worked for. Typically, this was a direct consequence of their age and the limited time they had to accrue professional experience. This inexperience often became problemat ic for sick young adults who needed time off for medical purposes including

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74 experience negotiating accommodations, participants often felt insecure taking time off , especially compared to their seemingly healthy peers who did not require these same ors requesting participants work in spite of their health needs. Here, young adults felt embarrassed by their condition and often felt their needs were undermined by the pressure to work. Healthcare In terms of healthcare, many young adults felt dismiss ed by healthcare providers as as discrediting and sometimes humiliat ing. Once in the healthcare system, young adults described exorbitant healthcare costs as impeding on their ability to secure financial independence, and subsequently, achieve adult status. The combination of student debt and medical costs for young adults with meager salaries often derailed their economic health. While participants described employment based insurance as a helpful resource to alleviate these financial burdens, they also described being bound to employment as effectively disrupting their ag ency to explore various social roles and positions. In this way, participants imagined their healthier peers explored the world in ways restricted to them. These experiences often included international travel and the exploration of various careers and job s. Here, medical costs and reliance on private insurance made participants feel a restricted sense of agency.

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75 Discussing the Covert As the data suggest, participants often changed their plans and redefined their identities according to their experienc es living with a chronic illness. While many young adults described these challenges and subsequent changes in the context of their illness, I argue that young adults felt compelled to redefine their experiences and identities based on the institutions and structures they lived within. I suggest that many challenges they described were not necessarily a product of their condition but a consequence of institutional, structural, and cultural expectations and feedback. The people who participants felt were ins ensitive, critical, and unaccommodating were also conditioned by the structures they operated within. IBD does not inherently deny young adults of the ability to participate in the activities and goals they felt deprived of participating in and achieving. Rather, unrealistic cultural expectations and rigid bureaucratic stand ards and institutions defined these experiences. Several examples provide evidence for this claim. For example, IBD does not inherently prevent individuals from achieving the title of valedictorian or attending prom. Nor does IBD cause tuition payments for unattended semesters. Rather, bureaucratic and intuitional standards within educational institutions decide these fates and define d these experiences for young adults. Bodily changes, including weight loss and weight gain, do not cause innate shame, but body norms deeply impressed within U.S culture communicate expectations of a normal body and result in bodily resentment . Similarly, the failure to achieve financial independence is no t symptom of IBD. Financial insecurity, rather, is often a consequence of medical costs that sick individuals with private insurance are burdened to lives, an explore various careers and social roles; instead, employment based insurance and the necessity

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76 for this insurance in a primarily privat ized healthcare system confined p articipants to positions that offer ed these benefits. And, attending work while sick is not an inherent drive, nor is natural or instinctual. Rather, these responses are shaped by capitalistic regulations a nd American work cultures that drive workers to maximize production by working consistent and long hours , even in times of ill health . experiences. Feelings of isolation are often social consequences informed by larger cultural expectations and pressures to be active, sexual, and good looking in young adulthood. Cultural But, I argue Rather this disappointment can be recognized as a product of cultural values attached to biological reproduction. Importantly, these expectations and the per ceived failure to meet them were structured by time and place . Normative expectations of when people should get an education, become financially independent, or have children influenced the ways that participants perceived themselves and their experiences in relation to these time sensitive standards. Idealized often creating a very restrictive standard to achieve. Furthermore, this data cannot be divorced f ontext in which millennials experi ence additional barriers to attaining employment, with more educated people underemployed than ever before (Milkman 2017). Additionally, the significant increase in cost of private education and healthcare proved to be det

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77 These examples underscore the flawed and problematic nature of the structures and institutions that govern the lives of sick people. In these terms, the actual nature of illness becomes less relevant th an the social consequences of it, meaning these findings extend beyond those who have IBD and likely apply to other young adults with chronic illnesses who navigate these same institutions and live within similar cultural boundaries. What Can We Learn and Where We Should Go It is clear that meaningful changes must be made to better accommodate young adults with chronic illness. Institutional processes and cultural norms should be shaped based on empathy and communal wellbeing. Institutions must consider the motivations behind existing policies and guidelines in order to make meaningful change. T here must be a cultural shift that allows people within these institutions to expectations Per haps if changes were made based on principles of empathy and compassion, young adults with chronic illness would be alleviated of some of the burdens and challenges they face. Below I will provide a brief overview of political and cultural changes that cou E ducational institutions must find a way to foster a culture of trust rather than skepticism to reduce bureaucratic and laborious processes for sick peopl e who are often absent. Additionally, reducing the cost of school tuition would relieve young adults with chronic illness of the burden of repaying student loans while financing medical care. Family, friends, partners, and strangers should offer young adults with chronic illnes s patience, sympathy, and respect. Stigma surrounding the need for caretaking and social support

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78 would shift to a more collective culture, reducing chronically ill youn for their required dependence on family . Employers should be encouraged to provide sick employees with empathy and value them as individuals rather than resources to the companies they work for. Federal laws that ensure paid sick leave, paid time off, and vacation days would be helpful to chronically ill people who often require time off. And , FMLA should be provided to all employees, regardless of the support chronically ill young adults who are often new employees that could require extended time away from work. Healthcare must be reformed to become more accessible and affordable for you ng adults who are often under resourced both in terms of informat ion and finances. Perhaps, extending the age of parental coverage would help young adults feel less rushed to secure independent employment. Or, the separation of employment and health insurance might allow young adults to conduct their lives with more age ncy to explore various social roles and occupations. In either case, it is important that young adults re ceive some educational training on how to navi gate complex healthcare systems and protect themselves within them. Finally, it is important to understa nd the interconnectedness of these institutions. As the data demonstrate pay student loans, while the exorbitant cost of college sometimes prevented participants from successful ly paying their medical bills. The relationship between employment and healthcare required that participants secure a job that provided benefits before they were no longer efits often families and sometimes impacted their life trajectories. Obviously, this is a cyclical process

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79 without clearly defined starting or ending points. Thus, it is imp erative that the reformation of all systems take place in order to create effective and lasting change. Clearly, these sorts of cultural and political changes necessitate more thought and detail than provided above. However, these suggestions sho uld be t aken into consideration as starting points to inform substantive changes. Limitations and Future Research It is important to recognize the privileged social positions most of my participants occupied as middle class white people with access to c are. Evidently, this sample is not representative of all young adults with IBD but remains relevant as it communicates the challenges even we ll resourced sick people face. Future research should be conducted on young adults with other chronic illnesses to evaluate the parallels and differences between this population and a broader range of chronically ill young people. This study was also limited to the experiences of 20 people and only employed in depth interviews as a method to investigate these experienc es. Future researchers should purposefully recruit diverse populations including people of color, LGBTQ+ people, and people who do not have access to f ormalized care. A larger sample size a nd mixed methodology might offer a more comprehensive depiction of these experiences. Finally, future research should more deeply consider the changes needed to be made to accommodate youn g people with chronic illnesses as they deserve to be heard and represented in all forms. Researchers might consider interviewing insti tutional actors or policy makers to better evaluate how and why systems currently exist as they do.

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85 Inside Higher Ed, November 13 th , n.p. Rubin, David T., Marla C. Dubinsky, Remo Panaccione, Corey A. Siegel, David G. Binion, Sunada V. Kane, and Joseph Hopper. Digestive Diseases and Sciences 55(4): 1044 1052. Saunders, Benjamin. 2 Sociology of Health and Illness 36(7):1020 1036. Who Live with Pai Sex Research 33(3):249 256. Schulma n, Shmuel & Jennifer Connolly. Emerging Adulthood: Reconceptualization of the Field . Emerging Adulthood 1(1):27 39 . Seale, C. and J. Charteris eraction of Class and Gender in Illness Sociology 42(3):453 369. Future of Children 20(1):19 41 Seymour Smith, Constructed Feminism and Psychology 16(1):1 32. od in Changing Societies: Variability and Annual Sociological Review 26:667 692. Shubin, Segei, Frances Rapport, and Anne Seagrove. Being Chronically Ill: Beyond Disease Trajector Social Science and Medicine 147:105 112. Simren, Magnus, Jenny Axelsson, Rolf Gillberg, Hasse Abrahamsson, Jan Svedlund, and Einer The Impact of IBS The American Journal of Gastroenterology 97(2):389 395. Health Behavior 34(4):402 411. Stjernman, Henrik, Curt Tysk, Sven Almer, Magnus Strom, and Henrik Hjortswang. 2011. Related Quality of Life, Social Factors Gastroenter ology and Herpatology 23:671 679.

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86 Society of Gastroenterology Nurses and Associates 34:429 448. s Health 1(3):401 407. Symbolic Interaction 36(1):21 39 . Trindade, Ines A., Claudia Ferreria, and Jose Pinto Goveia. 2015. Symptomatology and Depression: The Exacerbate Role of Maladaptive Psychological Digestive Diseases and Sciences 60(12):3756 3757. Tu HT. 2004. Issue Brief Center Study Health System Change 88:1 5 Journal of Health and Social Behavior 51(S):S54 S66. Body and Society 16(2):72 94. Williams, Simon J., Michael Calnan, and Jonathan Gabe. 2000. Health, Medicine and Society. London, New York: Routledge. Witt, Jon. 2016. Soc. 4 th ed. Penn Plaza, NY: McGraw Hill Education.

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87 APPENDIX Interview Guide Basic Questions and Identity : Can you tell me a little bit about yourself? Where are you from? Where did you grow up? Did you graduate high school there? How many siblings do you have? Are you employed ? If so, where/what do you do? Where are you living now/ with who? What're some of your hobbies? Can you describe yourself in three words? How would others describe you? What is your favorite part of yourself? And the least? Before Onset: Can you describe your life before you began experiencing symptoms? Probes: Where did you live? What was your social life like? What kind of activities/hobbies did you participate in? Who were you dating? Onset: How old were you when you began noticing symptoms? What were these symptoms? How did you feel when you first began noticing symptoms? What did you think the problem might be? Who was the first person you told about these symptoms? How did you decide to seek professional care?

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88 How long after you noticed symptoms did you see a doctor? How do you know this doctor? Recommendation? Family care? Who made the appointment? Who did you go to the doctor with? How did you feel going into the doctor? What was the process after you met with a doctor? What was it like when you finally had a di agnosis? Who was most supportive during this process? Probes: Who did you feel most comfortable talking to about this? When have you wished there was more emotional support? Treatment if continued in health care system : with your doctor ? (Do you feel understood/sympathized with?) To what degree do you make decisions with the doctor? What How well is that working? How did you g et to this treatment plan? How has treatment impacted your life? What are some side effects of treatment? Health care: Based on your experiences, what do you think of the health ca re system? Treatment for this disease can be expensive, how have you managed to navigate the health care system, i.e., insurance, out of pocket, etc. Have you had financial support from parents/partners/other outside resources? e spent out of pocket?

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89 How have medical expenses changed your financial standing, if at all? What do you think would be the best way to teach young adults how to navigate the healthcare system? After diagnosis: IBD changes lives in many ways. Ca n you tell me some of your feelings and thoughts about living with this illness? What changed for you after diagnosis, if anything? How did your activities change, if at all? How has your social life changed, if at all? How have your interpersonal relatio nships changed, if at all? How has this illness changed your ability to be a good partner, friend, family member? Did your sense of self change? Or how you think about yourself change? How so? Does this ring true for you? If so, how? What part of your life has changed the most? Probes: Diet? Sex? Physical activities? Disclosure: How do you decide who to tell that you have this illness? Who knows? What tim es have there been that you disclosed and regretted it? Stigma: Can you share any negative emotions you've experienced due to the symptoms of this disease? Can you explain a situ ation that you felt particularly embarrassed by the disease? (If you were with other people, how do you think they perceived you?) How do you recover from embarrassment? Who do you feel most comfortable to talk to about this?

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90 Who do you feel the least com fortable to talk to about this? What is the worst part about having IBD? Management: Have you come to a place of acceptance? How have you come to a place of acceptance? What wi ll it take to come to a place of acceptance? Young Adulthood: H ow do you define adulthood? Would you consider yourself an adult? How has IBD changed your path to adulthood, if at all? What has your experience been with school/work? End on: Has the i llness changed your ideas about having children. If so, how? How do you think this might affect future relationships, careers, or plans? Have there been any benefits or unforeseen advantages? What would you tell others who are newly diagnosed? Where do y ou hope to be in 5 years? Both personally/medically?

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