Chronic Concealment and Awareness in the Affective Worlds of Young People Living With Chronic Illness

Abstract

From the onset of chronic illness, a variety of challenges emerge—challenges that both persist and evolve as life progresses. For young adults living with chronic illness, the age-specific difficulties of becoming ill while young form a foundation that shapes their experience of illness in enduring ways. This paper draws on a series of in-depth qualitative interviews with 33 young adults (aged 19–29 years old) living with a range of chronic illnesses, including fatigue syndromes, auto-immune diseases, and neurological conditions. Participants demonstrated an emergent chronic consciousness of how others perceived their health, which created a series of fraught affective tussles centered on relational recognition and feared judgment. This article explores the difficulties and concerns participants had when communicating the nature and realities of illness; the emotional toll of attempting to avoid attention and judgment from others regarding their conditions; and the ways in which others could productively and sensitively acknowledge participants’ illness experiences. We demonstrate that the process of learning how to navigate these issues was one important way that participants began to integrate their illness (and its implications) into their emerging sense of self and adult life.

Introduction

The lived realities of chronic health conditions do not materialize overnight. Deciding to seek medical help, protracted diagnostic processes, and even longer trajectories toward stable management regimens can take months, and for many, years (Jeske et al., 2024; Sheppard, 2020). In addition, it takes time to come to terms with what it means to live with a chronic illness, especially given so much of this experience is tied up in the cumulative weight of looming and/or disruptive chronic symptoms (Halloy et al., 2023; Sanderson et al., 2011; Saunders, 2017).

Youth has a profound influence on the experience of chronicity (Wedgwood et al., 2020), in part because young people do not fit the normative model of the “chronically ill” (Monaghan & Gabe, 2019; Werner & Malterud, 2003). There is systemic underreporting of chronic illness rates among young people, and, in the case of children especially, the necessity of having an adult see their pain and advocate for their care is another hurdle which can make diagnosis difficult (Chapron et al., 2019; Landry et al., 2015; Sommer et al., 2023). Adolescence and young adulthood are periods of major identity work (Kroger, 2004), and the intensity and plasticity of this time is reflected in the variety of responses young adults have to living with, and making sense of, illness (Grinyer, 2007; Monaghan & Gabe, 2015; Poku & Pilnick, 2022; Polidano et al., 2020).

There continues to be considerable medical uncertainty surrounding many enduring and emerging chronic health conditions, with possible management regimens and prognostic trajectories often remaining unclear after diagnosis (Boulton, 2019; Bülow, 2008; Harsh et al., 2016; Hudson, 2022; Uher et al., 2023). This ongoing clinical and everyday uncertainty has serious medical, social, and emotional consequences, including around the perceived legitimacy vis-á-vis stigma associated with many chronic conditions (Broom et al., 2015; Dumit, 2006; Jackson, 2005). The resulting “psychosocial ‘texture’” (Wetherell, 2012, p. 2) of chronic illness is made up of the relationships between the lived physical experiences of illness and pain, individuals’ previously established beliefs and emotions, and encounters with others which are both real and imagined (Ahmed, 2004a, 2004b, 2015; Goodley et al., 2018; Sointu, 2016).

This article draws on 33 in-depth qualitative interviews with young adults, aged 19–29 years old, to examine how they live with chronic illness, especially in relation to their experiences of recognition and concealment. Centering the lived experiences of participants, we approach this topic with a critical sociological lens that sees illness as both an embodied and socially mediated experience.

First, we position our study both within empirical sociological literature on experiences of illness and within conceptual scholarship on affect, visibility, and recognition. We then outline our methodology and explain our theoretical approach to our analysis. Next, in our results, we analyze the ways in which our participants managed the complex fears and desires surrounding recognition and concealment in relation to their chronic illness and health. This, we argue, reflected our participants discomfort with the binaries that pervade the experience of illness and demonstrates the need for a greater cultural and social understanding of the affective nuances that come with chronic living. Ultimately we argue that the experience of chronic living in young adulthood is defined in-part by a chronic consciousness of how the “healthy other” is perceiving one’s body and illness, thereby both increasing the emotional weight of illness and, simultaneously, the desire to conceal its impacts.

Background

Experiences of Illness and Injustice

This article builds on sociological literature that seeks to take seriously the emotional, social, and political challenges that come from living with a chronic illness (Bury, 1982; Charmaz, 1983; Conrad & Barker, 2010; Nettleton, 2006)—what Manderson and Wahlberg (2020) term “chronic living.” An important component of these experiences are the ways in which the onset of illness can create a need for new stories about one’s past, future, and identity (Bury, 1988; Frank, 1995; Williams, 2000). This rich body of scholarship on the undulations of chronicity has also sought to understand how people “live well” with enduring illnesses (Bury, 1991; Charmaz, 1995), and a subset of more recent research also focuses on how these practices manifest specifically for young people (Heaton et al., 2016; Monaghan & Gabe, 2015, 2016, 2019; Poku & Pilnick, 2022; Polidano et al., 2020; Spencer et al., 2021).

Previous studies have explored how the desire for a coherent, integrated, and familiar “self” can motivate considerable identity work as individuals try to be recognizable to themselves during illness (Corbin & Strauss, 1985; Deegan, 2001; Frank, 1995). Identity work is also done by people when seeking to manage how they are perceived by others (Glenton, 2003; Lonardi, 2007; Moensted et al., 2023; Werner & Malterud, 2003). To this end, a number of scholars have examined how rendering one’s condition and experience “legible” to medical authorities, political establishments, and social networks is a recurring stress in many illness experiences (Barker, 2002; Broom et al., 2015; Lewis et al., 2024; Moss & Teghtsoonian, 2008; Nettleton, 2006; Overend, 2014). An important context to this is the long history of science and medicine disregarding embodied experiences and knowledges (Garland-Thomson, 2002; Haraway, 1988; Morris, 1992; Wendell, 1989).

Some recent contributions to this literature use the lens of epistemic injustice (Fricker, 2007) to help highlight the pain and injustice individuals experience when they are not equipped to describe their illness experiences (hermeneutic injustice) or when their illness experiences are not believed (testimonial injustice) (Buchman et al., 2017; Carel & Kidd, 2014; Ho, 2011; Kidd & Carel, 2017; Mladenov & Dimitrova, 2023; Wardrope, 2015). These failures can be felt particularly by those at the intersection of minoritized identity groups (Mullard et al., 2024; Sebring, 2021), in part because there is systemic under-research of particular conditions and illness experiences (Frickel et al., 2010), and also because of the disproportionate underdiagnosis and undertreatment of patients along the lines of gender and race (Hudson, 2022; Knoebel et al., 2021; Lee et al., 2019; Richman & Jason, 2001).

Disciplining, Affecting, and the Paradox of Visibility

The idea of “invisible illnesses” has gained traction among those living with particular illnesses to denote conditions that are “characterized by chronicity and symptoms that are not externally manifested [… symptoms which] are not only non-observable, but also typically immeasurable [due to a lack of biomarkers]” (Donoghue & Siegel, 1992, pp. 4–7). Attending to invisibility highlights experiences that coalesce around not being seen, whether that relates to doctors not believing patient accounts, medical tests suggesting that everything is “normal,” or there being little political or social will to research or accommodate conditions (Davis, 2005). Sociological literature on chronic in/visibility demonstrates however that we should be cautious of the evaluative binaries these discussions can entail (Brighenti, 2007). There are many ways that we can see (or not see) certain things or people, and visibility can be both good and bad: for example, certain groups can be perniciously watched to their detriment, while others can be intentionally erased (Casper & Moore, 2009). Additionally, the binary of in/visible can imply the categorization of people into the false dichotomy of either “hiding” their identity or of “revealing” who they are (Gray, 2009). In the day-to-day, visibility is actively managed across a broad spectrum, where, depending on context, different levels or types of visibility can be desired, and “being seen” can mean different things. These complexities of visibility arise alongside concurrent arguments about the role of recognition in self-actualization, and the injury caused by a refusal to recognize the difficult work one does to act and be seen as a differentiated individual with moral worth (Honneth, 1995). This relationship between self and other preoccupies key texts in the sociological cannon (Goffman, 1959, 1963; Hegel, 2003; Mead, 1934).

Albeit in relation to race, rather than health, Du Bois’ concept of “double-consciousness” captures the effects of subjugation and misrecognition through an analysis of the dual identity of African-Americans in early 20th Century America (Du Bois, 2007). Sociologically, it is a rigorous exploration (written before Goffman and Mead’s work) of how mutual recognition can function in different social relationships, and it has particular conceptual strength for self–other relationships that are “predicated on domination” (Meer, 2019, p. 52).

The key section comes from Du Bois’s The Souls of Black Folk when he writes:

It is a peculiar sensation, this double-consciousness, this sense of always looking at one’s self through the eyes of others, of measuring one’s soul by the tape of a world that looks on in amused contempt and pity.

(Du Bois, 2007, p. 3)

This resonates with the tensions that emerge in existing literatures on the experience of chronic illness: rather than receiving acknowledgement for their worth, capacities, and struggles, those with chronic illness can feel a sense of alienation due to the contemptuous observation of them as a pitiable and objectionable “other” (Monaghan & Gabe, 2019; Scambler, 2004). Often, this is done with discourses that reflect a desire for medical and individual mastery of the body (Grosz, 1992; Petersen, 2006; Reeve, 2002) while also imposing a morality on health, illness, and their management (Grønning et al., 2013; Monaghan & Gabe, 2019). This social context is important to consider when analyzing the ways in which various affect-laden interactions impact those who are ill (Goodley et al., 2018).

These tussles between care, “cure,” visibility, and privacy have deep resonances for the experience of illness and disability (Kafer, 2013; Kittay & Feder, 2002; Shakespeare, 2000; Wendell, 1996). Additionally, feminist disability scholars have outlined how the consistent construction of binaries in society marginalizes both women and disabled people—and particularly those at the intersection of these two identities (Garland-Thomson, 2002; Meekosha, 2002; Wendell, 1989). The problem (yet presence) of binaries has also been used to explain the potential for illness to “disorient,” as the embodied experience of illness destabilizes the binaries we are taught to expect, both in relation to health/illness and in relation to the familiar/strange body (Harbin, 2012, 2014, 2016; Lajoie, 2019).

Our research therefore aimed to understand how young adults navigate their lives with and around chronic illness. Our analysis is underpinned by a commitment to the messiness, instability, and complexity of the world and our subject matter (Clarke, 2003; Law, 2004). In the case of chronic illness, these complexities are particularly evident at the intersections of lived physical experiences and the social mediations of appropriate responses to them. We were therefore interested in understanding what made the lives of young adults with chronic illness difficult, but more than that, we also wished to work with participants to hold space for the complexity of their lives and report on their desires for change (Thomas, 2010; Watson, 2012).

Methods

Design and Ethics

This paper comes from a qualitative research project which sought to understand the experience of young adults’ living with a physical chronic illness in Australia. The project was approved by the University of Sydney Ethics Committee (HREC 2022/521). Once participants expressed interest through either an online form or by directly emailing IH, they were sent the Participant Information Statement (PIS) and the Participant Consent Form (PCF) so they could look over it in their own time and ask any questions. The PCF had to be completed in either soft- or hard-copy before the interview.

Semi-structured interviews were conducted, and the interview schedule was structured around three themes: experiences of health and illness; care; and relationships. These themes were explored in interviews with a particular focus on how they intersected with participants’ youth. Space was given throughout for participants to tell stories that they saw as important, reflecting that stories can be an important way that many people strengthen their sense of self when dismissed, attacked, or trapped by prevailing narratives that stigmatize and dismiss illness experiences (Thomas, 1999).

Recruitment of Participants

Thirty-three interviews took place in this study. Participants were aged 19–29 years old, with an average age of 23 years old. Of the 33 interviews, 23 were women, one was a non-cis man, nine were people of color, seven had gone to either primary or high school outside of Australia, and eight had grown up and/or currently lived outside a metropolitan area.

After obtaining ethics approval, recruitment materials were distributed both in person and online. Eighteen participants were recruited via physical flyers in community settings, seven through an advertisement on “research” pages of relevant organizations’ websites, four through physical flyers in a specialist’s waiting room, three from having the flyer passed on to them by a non-participant, and one through a social media post. Interviews were conducted either face to face (19) or via video call (14) between March 2023 and February 2024.

Participants lived with a variety of conditions, including reproductive conditions such as endometriosis and premature ovarian insufficiency (POI), neurological and neuro-immune conditions such as multiple sclerosis (MS) and epilepsy, auto-immune diseases such as rheumatoid arthritis and inflammatory bowel disease (IBD), and fatigue and autonomic syndromes.

Recruitment materials explained that “you do not need a formal diagnosis to participate in this study” and that “if you have had your life impacted by persistent health difficulties for more than 6 months, and you feel that these difficulties are part of a unified ‘condition’, we want to hear from you.” This criteria was chosen in the hope that it spoke to the feeling many have pre-diagnosis—the feeling that something is wrong, and that their health difficulties are in some way connected, but that they do not (yet) have an official name to put to it (Nettleton, 2006). Four participants did not have a diagnosis when they signed up for interviews, and they each reflected on their surprise but also joy at seeing a description for their situation in a research flyer. Previous research has contextualized that this experience of being “undiagnosed” can be a liminal one where it is unclear who is able and willing to help (Nettleton et al., 2004). This was a dynamic we did not want to emulate by suggesting that our research was not for them. Other participants who had diagnoses that only partially explained their symptoms also expressed that these criteria made them more confident that we might be interested in their experiences.

Another motivating factor for not requiring a diagnosis was that we recognized many people struggled to receive a diagnosis, and even stopped seeking a diagnosis, due to factors such as financial strain or bad experiences with medical professionals. Given these experiences may be particularly common and influential for people with other identities that face prejudice (such as women or people of color), we believed it was important to make it clear that we did indeed want to hear from them (Mullard et al., 2024; Sebring, 2021).

The inclusion of diverse diagnoses and experiences allowed us to think about what elements of chronic illness impact people’s lives, rather than having biomedical descriptions of illness draw connections for us (Cluley et al., 2021; Kralik et al., 2010). Many people with a variety of conditions see themselves as part of a broader chronic illness community (Swoboda, 2008), and we felt that this was an important insight to listen to when designing this study.

Given the highly sensitive nature of the interview data, care has been taken to ensure anonymity of participants—participants are given an age bracket, and conditions are referred to in enough generality to stop them from being potentially identified due to their rarity and/or a participant’s identifiable constellation of conditions and experiences. All names are pseudonyms.

Analysis

Interviews were transcribed verbatim, de-identified, and analyzed in line with an inductive interpretative analysis based on constructivist grounded theory (Charmaz, 1990; Charmaz & Belgrave, 2012). First, IH (re)familiarized herself with the transcripts and “mapped out” the social, relational, and discursive elements present in each interview (Clarke, 2003; Clarke & Friese, 2007). Second, IH iteratively developed a set of descriptive categories of the themes which arose in the interviews. Third, all authors analyzed this categorized data, which allowed for the development of theoretical ideas and concepts. Rigor was ensured by internal review of our analysis and writing, which confirmed that the final work reflected all authors’ interpretation of the data. Further, in both analytical steps, care was taken to maintain the richness and complexities of participants’ experiences, and we sought to find and highlight atypical cases and contradictions which arose both between and within interviews (Charmaz, 1990; Clarke, 2003). We periodically returned to the literature to re-evaluate which theoretical tools could help explain and represent the ideas that had emerged (Ezzy, 2002).

Results

In the interviews, participants consistently recounted their concerns about how their illness and health was viewed by others. This concern came from their own sense of disorientation in illness—illness felt indescribable, and they reported losing trust in their body. This embodied sense of instability furthered fears about how others would view them. Participants therefore engaged in concealment practices due to a concern that the “healthy other” would see them as someone defined and limited by illness. The pressure to hide or deny the impacts of illness was exacerbated by institutional and social rhetoric that promoted normalcy, cohesion, and control of one’s body. That said, participants did find ways to understand and discuss their illness outside of the shadow of social and institutional binaries, and their stories in this regard are instructive for how a different social construction and cultural discussion of illness could better serve young adults with chronic illness.

Disorientation

When recounting the onset of illness, all participants reported points in time where they felt disoriented, overwhelmed, and suffocated. Their descriptions of these feelings extended beyond the difficulties of managing symptoms: they recalled a sense that something fundamental was changing or had changed but that they did not know how to articulate what was going on.

When Matilda (19–21, female) had her first seizure over 4 years ago, her and her family were told that it was likely a one-off event. A few months later, though she had another seizure, but when she was taken to hospital, the epilepsy diagnostic tests—which seek to trigger a seizure—could not find anything abnormal. What followed was a cycle of going on an epilepsy medication, having 4–6 months seizure free, having a seizure, and then needing to either increase her dose or try a new medication all together. They still cannot tell her what type of epilepsy she has.

Her description of the first 3 years of this cycle revealed the ways in which these feelings of disruption and doubt cast a shadow over her whole life. It was precisely that though, a shadow, and the impact was everywhere but difficult to grasp or define:

Because when it first happened, it was just this sense—just this overwhelming sense that did take a long time to really process—it was just the whole thing of: this has changed my life forever. Even if I get over it, even if it passes, even if it turns into something worse or better, it still is a big block on my life. It took a long time to get through the whole thing of, “what do I do now?” […] You feel locked out, but also surrounded. Like … I don’t know how to describe it. I felt pushed to the side of who I was before, but at the same time just constantly surrounded by questions.

Another participant, Jack (22–25, male), who was now diagnosed with chronic fatigue/myalgic encephalomyelitis (CFS/ME), recalled the way in which the onset of fatigue in high school had an immense emotional toll on him. He knew that something was wrong, but he could not explain to himself or to others what was going on:

Over time these things start stacking up. And it just … it gets to this point where it just … you’re so alien from—you just feel so alien from yourself. These things that are so mundane and easy become so challenging. And there’s just not words for it, because how do you describe something that is the total lack of anything happening at all?

These descriptions extend beyond a loss of self that comes from no longer being able to partake in activities that usually help construct one’s identity and life. Instead, participants described the uncertainty of illness as overwhelming their ability to know who they were—there were so many questions, and so much difficulty in articulating the disruption of illness, that they were too disoriented to keep sight of themselves.

When participants had not initially received the help they needed, this often continued to undermine their confidence and ability to speak to others about what was going on and the support they craved. Some participants had previously been convinced by health professionals that nothing physical was wrong with their body or health, while others had suspected something was wrong, but had sufficient uncertainty around their experiences that seeking help felt impossible. As Jack said when reflecting on his time at school:

And how do you approach a teacher when you’re like, “I’m in pain and really confused”? That’s a lot, and it’s so broad, it’s just really hard to get help. Unless you already … unless you’re really able to be honest with yourself and with teachers, and you have a lot of experience in that, how are you supposed to suddenly open up to these people and get the support you need?

When participants discussed the difficulty of seeking help, they often spoke of struggles they faced internally. Difficulties in describing their illness, or admitting they needed help, were barriers to identifying, never mind advocating, for their own needs. Often, the intermingling of physical concerns with mental health issues made participants doubt themselves as well as be doubted by others. Further, symptoms like fatigue and pain made it so that participants felt they did not physically have the capacity to seek help. Sarah (19–21, female), who had been living with CFS/ME for almost 10 years, admitted that while at school “in many ways it was easier to just not talk about it, let them think what they want to think, and go alone.” While at times framed as an individual issue, participants’ difficulties in speaking about their experiences also reflect that the institutionalized expectations of illness did not reflect their embodied experience, rendering it unspeakable.

Trust was another recurring theme in participants’ discussions of their illness experiences. Trust was not only an important (and often missing) dynamic with their treating physicians (Boulton, 2019; Buchman et al., 2017; Ho, 2011)—participants often recalled losing trust in themselves and their bodies. This was the case for Grace (21–25, female), who had begun experiencing dysautonomia symptoms over 5 years ago. While a diagnosis of postural orthostatic tachycardia syndrome (POTS) helped her make some helpful lifestyle changes and explain to others what was going on with her health, it did not resolve her own anxiety and distress at the realities of living in her body:

I guess I had lost a sense of trust in my body. Particularly with my fainting, I was always worried about where I would faint, if there would be someone around me who could help or who would know what was happening, who could explain it to others. I was like, “I don’t want an ambulance called, I don’t want that.” I would get my friends and be like, “can I go faint in your car instead of being in a public place?” So that sort of … I didn’t trust my body.

Participants spent significant time describing their emotional distress and confusion about the onset of their illnesses, and considering how this impacted their subsequent actions. However, as outlined below, the sense of being lost—for words, for direction—cannot be separated by the fact that the guidance they needed was not there.

Chronic Concealment (and its Consequences)

The above descriptions of chronic uncertainty, combined with a persistent struggle to articulate the need for help, was a precarious foundation for young people to make decisions about when to disclose their conditions and how to discuss the impact of their health on their life. The stories told by some participants about hiding their condition from others reveal persistent anxieties about, and avoidance of, conversations on what was going on with their health.

As above, personal difficulties in coming to terms with a condition combined with a fear that the condition would not be taken seriously. This tension—between not wanting to make it real by talking about it, but also being deeply concerned that, if disclosed, others would not see it as real—loomed over participants as they constantly negotiated how and when to discuss their condition. For example, Lara (22–25, female), who has hypothyroidism, explained that she often avoided talking about it both because “it feels like there is another layer to me that is hard to express to others, because I want to not be dismissed, I want to be validated and understood, but I’m not sure how others will take it” and because “I didn’t want to admit to myself that I had an invisible illness—I think I always hoped that it would go away, that it would curable.”

One concrete consequence of this was an avoidance of registering with disability services with schools and universities. In some cases, this happened through iteratively denying to themselves (and sometimes to others) their need and worthiness to access accommodations. Matilda offered a particularly stark example of this when she recounted her decision to not report a seizure she had during an end-of-school exam:

I had [a seizure] during one of my [final year] exams, my [subject] exam. The teacher who was watching us thought that I had just had a mental breakdown. They commented, they just said, “oh, this student has just fallen off their chair and started sobbing.” And it was actually that I was in the middle of a seizure. And then I just came out of it and went, “ok, well I’ll just get on with it.”

More often, decisions to hide a health condition came in social situations. One anxiety which commonly prompted participants to not disclose their health condition, or to not discuss how it influenced them, was a fear of being judged as “less than.” The experiences which created these anxieties varied. In some cases, interactions that explicitly cast judgment on others who were ill loomed in the minds of participants as they considered what to disclose and to whom. For Jess (26–29, female), who was diagnosed with IBD after leaving school, the way she initially spoke about her illness with friends was impacted by the same group’s reaction to another friend who had been diagnosed with IBD while they were at school:

When I was diagnosed I had been in a group of friends at school where someone else had been diagnosed with [IBD] a couple of years before. […] And a few friends at the time kept talking about how I didn’t make [IBD] my whole life, and they couldn’t understand the fact that she would talk about it all the time. […] People ended up stopping talking to her because they felt like they couldn’t have a conversation with her about anything without it coming back to [IBD]. And then I felt this really big fear of not mentioning my [IBD] after that, because there had been such a big backlash to her. […] It’s such a vivid memory. And it was specifically one person who was like, “you’re so different because you never mention it, and we like you more because of that.”

The need to manage the perception of illness here is clearly not just a product of internal anxieties—Jess’s friends explicitly compared her lack of emphasis on illness favorably to another’s externalized distress at being ill, and Jess continued to stay quiet about her illness accordingly. Lisa (26–29, female) had also decided to not discuss the impact IBD had on her life based on reactions she had seen others have when people discuss their own mental illnesses:

I’m a bit more reserved about [telling people] because you’ve kind of seen people’s reactions when someone talks about, let’s just say for example you’ve got someone who has quite a lot of depression and anxiety and they’re very open about their depression and anxiety, there’s a lot of people out there who kind of roll their eyes and are just like “ugh, she’s talking about it again, no one cares, why are you talking about this?” So I kind of have the feeling that there’s a lot of people out there would have the same reaction to me talking about this.

Lisa went on to further articulate her anxieties about how people would interpret her discussion of illness:

I just don’t want people to think it’s my personality. […] Every so often you can lie in a hospital bed, you can have cords, everything running off you, people are looking down at you in pain, and you can be a bit scared, and think, “I wish someone was here.” But no, I’m not going to tell anyone, because I don’t want to be that person who’s like “hey, I’m in hospital, give me attention.”

For Lisa, this concern that people would equate her illness with her personality and see her disclosure that she was in hospital as a bid for attention resulted in her censoring her illness experience. Throughout our interviews, it was rarely the diagnosis itself which needed to be hidden—instead participants sought to hide that the emotional and physical impacts of illness were an ongoing and important part of their lives.

It was not only participants who had memories of judgment that did not want others to observe the impact of illness. There was an extremely strong sense from participants, regardless of past experiences, that the gaze of the healthy other would see only their illness, and the ways in which it compromised both their identity and their abilities. The complexity of this concealment often made participants hesitate in their descriptions of it, since it was not so much that they were hiding illness, but rather obscuring its impact. Ethan (22–25, male) had been diagnosed with type I diabetes as a young boy, and found himself reflecting on the stress he felt at school, and continued to feel now, when he needed to manage his insulin levels with others around:

It’s very much sort of trying to keep it … hidden, but not like hidden, but you don’t want to be a hindrance to the fun of the group. […] I don’t want any attention, I don’t want to be the one slowing things, I don’t want to be the weak link. […] Because you know, it’s ok to be different if it’s a good thing, but that’s not a good thing. […] It definitely is something that even now I try and hide. Because I don’t want the attention, I don’t want the unwanted eyes.

Aisha (26–29, female), who managed neurological symptoms such as tremors and migraines throughout school without seeking a diagnosis or medical treatment, maintained that, had she not concealed her symptoms at school, it would not have been possible for her to receive equal treatment:

[At school] I thought, if I keep it under control, no one needs to know. […] I completely and utterly refused to acknowledge the issues I was going through to my peers. Because they had a healthy body. The fact that I don’t have a healthy body means that I’m going to be an outcast between them. […] So it’s … it’s hard to talk to people. Because no matter how hard they try, they will treat you differently. It’s subconscious. They’ll see you as someone they need to take care of. And I don’t like that.

In Aisha’s interview, it was clear that her concerns did not just relate to individuals who might misunderstand illness but that the whole social ecosystem of school was not capable of treating her outside of the binary of “healthy and capable”/“sick and incapable.”

Participants believed that any discussion of a chronic illness with others could perpetually corrupt their ability to see them beyond their illness. Matt (22–25, male), who in his final year of high school had needed to lie down in class due to his auto-immune arthritis and degenerative spinal injuries, wished that he “could have just suffered in silence” rather than reveal the extent of his pain. Everyone knew something had happened because he had to stop playing competitive sport, but the fact it was a chronic illness with an unclear progression and treatment program made the situation far worse than a “season-ending injury.” Again, there were perhaps institutionally acceptable ways to be impaired, but chronic illness was not one of them.

While Matt was now far better equipped to deal with the mental and emotional stress of his pain, he was still cautious when telling others:

Let’s say I tell them, because in that week I’ve had a flair up and I’m really in pain that week, and then the next week it has subsided. Now I’ve told them and the cat’s out of the bag, and they won’t see me the same after that. And I guess there’s a paradigm shift in how you’re dealing with people afterwards.

This echoes Aisha’s sentiment that, were one to see the true extent of illness, they could not appropriately integrate it into their treatment and understanding of someone as a whole. In this sense, a consciousness of one’s chronic illness does not just mean a concern about other’s immediate reactions—there is a struggle to trust that others will be able to bring illness in and out of focus in a way that reflects its ever-present yet fluctuating roles in one’s own life.

In this context, participants found ways to negotiate between their need to manage their health and their desire to deflect away from their illness. Georgia (19–21, female), who was managing serious fatigue symptoms, explained that:

I just say, “oh, I’m not really feeling well, so can we do something in the day so I can get a good night’s sleep?” To me, that’s the best way to deflect it without talking about myself. I don’t want to look like I’m looking for attention, I just don’t really want people to know.

These attempts to obfuscate the impacts of chronic illness took their toll. The toll was often understood by participants through moments when emotions had physically boiled over, as Matt explained when remembering his final year of school:

And at that point […] I certainly felt like I was struggling, even if the [academic] results stayed the same. There’s a phenomenally greater amount of effort going in to try and maintain that baseline, which had the flow on effect of impacting my mental health. I remember, kind of, you know … crying, a lot … just to myself. I found it was just such an incredibly isolating feeling.

In this case, a key dimension of Matt’s struggle was his continuous insistence on keeping as many things as possible the same—where he did this, however, it had the compounding effect of making it more difficult for others to recognize his pain. His personal expectations here are impossible to disentangle from institutional and social expectations. Indeed, his fear of dropping below the “baseline” he saw for himself speaks to larger social anxieties surrounding “regression.” It also echoes other participants’ desires to disallow illness from being something that “detracts” from how they are externally valued.

For Ethan, who was otherwise just trying to “figure out all the complexities of a normal life,” an un-expected second diagnosis, related to his type I diabetes, was an additional and acutely overwhelming pressure:

So I go in, and they say I have [another auto-immune condition]. And I hear it like three times, but I can’t remember the name, because they’re saying so much. […] And then he says to me […] “If you don’t stay on top of this you will become paraplegic because it’s all in your spine. You need to be on top of this and never miss a single one because you will be a paraplegic.” And that’s just [hits hands to together]. […] I’d gone in expecting like, you know, “oh you’re iron deficient.” […] But it’s actually like, this is a lifelong disease, another one, another lifelong disease, and if you don’t manage it you’ll be in a wheelchair. And yeah, I just went home and collapsed on the floor and cried.

The conflict between fearing observation and longing for recognition runs deep, but time and time again, especially in adolescence, fear won. The anxieties felt by participants did not come from nowhere—participants had experiences of being treated differently, or of seeing others being treated differently, and did not trust that a healthy other could see their illness without losing sight of the fact they were the same person. In some cases, participants explicitly did not want to be cared for by others, but it was also the case that there was a fear that a need for care would be interpreted as a bid for attention.

Re-calibration, Recognition, and Re-integration

The process of learning to live with illness was not emotionally linear, and a sense of ease did not necessarily emerge for participants as they learnt more medical information about their condition. The need to make sense of illness outside of medicine was a recurring theme, and it was particularly important for those who had limited treatment and management options. Justin (22–25, male), for example, had lived with a chronic, painful skin-condition that developed while he was a teenager, and he had only ever found temporary, impractical, symptomatic relief. Given that otherwise no one could do much to help, he found that “the most important part of it is making sense of it mentally.”

Where participants did begin to learn to live well with illness, relief could again be felt intensely. David (19–21, male) remembered how he had started crying when he received his best marks yet at university, despite having to navigate ongoing fatigue with no medical diagnosis. The fact he could say “ok, I am making progress” offered immense relief from the constant invalidation of doctors not being able to offer a diagnosis, and his family insisting he continue to seek one.

In the context of an actual and perceived onslaught of doubt, uncertainty, and judgment, participants reported that developing a sustainable, emotional relationship with their illness was an important act of re-calibration amidst the initial disorientation of becoming sick. Sometimes it was the ability of others to respond in a supportive, non-judgmental way that allowed individuals to go forward with more honesty about the role of illness in their life. Sarah, for example, had eventually decided to post on Instagram about her CFS/ME after deciding that she should not be angry about people “not understanding” if she had never tried to tell them about her experiences:

I was determined to not make it a cry for help—I didn’t want it to be a pity post. It was just a, “this is how it affects me” kind of thing. And it was really cool, it was really cool the response people had. Because it wasn’t a kind of, “oh my gosh I’m so sorry for you” type of thing. It was just an “oh ok, thanks for telling me that.” And I was like, “oh, you’re welcome, cool, great.” It was such a relief talking about it, but not in a depressing way. Not a, “this is ruining your life” kind of way, just a, “this is my life.”

Matilda had also eventually found a way to talk about her epilepsy in a way which gave her relief from her chronic concealment of the anxiety around seizures and their physical repercussions. She had recently come to integrate epilepsy, and natural discussions of it, into her life:

I had to slowly tell more and more people. […] It got to the point where I didn’t hide taking my drugs. At parties, or sleepovers, or schoolies or what not, it just got to the point, where people were like, “oh what’s that?” and I was like “those are my epilepsy drugs, I have epilepsy, if you ever see me do this, this is what happens.” It just became a speech that I rehearsed. My uni friends knew straight away because I just straight away was like, “by the way I have this, if you ever see me do this, this is what happens, I have epilepsy.” It’s now just a defining personality trait, which I think is what initially I tried to make sure it wouldn’t become. But now it’s like, well it’s here, it’s happening, I may as well have a bit of fun with it, which is why I dyed my hair purple after coming out of the hospital. I just went, “I’ve had all this glue in my hair for a week, I’m going to treat my hair, I’ll dye it the color of the epilepsy foundation.”

What these stories of recognition share is that participants felt that they were talking about their illness on their own terms and that others were not using these stories as a way to judge them. In short, relief and re-integration came when their disclosures did not result in their illness being overly (and incorrectly) interpreted. Sometimes, this came after a leap of faith and was a surprise (as in the Instagram example where the response was “thanks for telling me that” instead of “I’m so sorry for you”). Other times, such as for Matilda, trust built up gradually through deliberate casual disclosures.

Not all participants had found a stable, confident, and clear sense of how to talk about their illness. That said, many had still learnt more sustainable ways to manage their illness, and with this came a definite sense of pride and relief. Self-recognition of the work it took to live well with illness was explicitly contrasted by participants to the binary expectation they felt existed in society, which was that their illness needed to either be demoralizing or inconsequential.

Discussion

Chronic illness in adolescence and young adulthood represents an under-researched, culturally marginalized, and highly complex arena of social life. The prevalence of various chronic illnesses in youth is increasing, and at least 10% of adolescents live with a serious chronic physical condition (Australian Institute of Health and Welfare, 2024; Perrin et al., 2014; Rosen et al., 2015; Sommer et al., 2023; van der Lee et al., 2007). This paper examines the various ways in which there can be critical failures in community recognition of this experience, which accentuates struggles to articulate what is going on and, relatedly, live well (enough) with chronicity. The testimony of our participants helps us understand how these critical failures present themselves in everyday life and also how they become “felt” in the experience of illness. Looking at instances where constructive recognition is found also allows us to imagine how a more nuanced social construction of illness would be less destabilizing and suffocating.

Participants’ accounts of learning to live with chronic illness reflected a series of dilemmas which arose when expected presentations of illness and binaries of life did not reflect their experiences. A primary dynamic of this was in their conflicting desires around concealment, recognition, and care. This highlights how webs of secrecy, unspoken assumptions, and cultural silencing can further limit communication about the body and health challenges while simultaneously creating a chronic consciousness of illness itself.

As participants discussed what they wished for in their life regarding care and recognition, it was clear that they were navigating a precious terrain, full of nuances if not outright contradiction. Some participants feared acknowledging their illness both because it made it “real” and because they thought others would invalidate their experiences. Others would say they did not hide their chronic illness, but still lived with a great deal of anxiety that, if they spoke about illness in the wrong way, others would roll their eyes and believe them to be attention seeking and self-absorbed. Consistently, participants stated that they believed others would see their illness as a defect, inconvenience, or cause for pity and that a “mis-handled” moment of disclosure would hinder others’ ability to understand them into the future. These conflicting feelings, which contradicted expected binaries, were difficult and disorienting (Harbin, 2012, 2014, 2016; Lajoie, 2019). Participants were thus forced to navigate desires for visibility in the confines of institutions and social settings that did not discursively accommodate the embodied reality and nuance of their situation, leading to a form of hermeneutic injustice (Fricker, 2007).

Put another way, a recurring theme in interviews was participants’ concerns about how the “healthy other” may perceive their illness. As outlined by feminist disability scholarship, the neglect and stigmatization of embodied experiences is felt particularly at the intersections of marginalized identities (Garland-Thomson, 2002; Meekosha, 2002; Wendell, 1989). In conceptualizing a healthy other, we should therefore recognize how this could take on other dominant identities, for example, a healthy male other, healthy white other, or healthy settler other. These dynamics can be understood as “looking at one’s self through the eyes of others” (Du Bois, 2007, p. 3), revealing how the social construction of illness impacts the ways in which young adults conceive of and express the role of illness in their life. The social context which participants described reflected literature which explores how morality is tied with health (Grønning et al., 2013; Monaghan & Gabe, 2019) and how bodies and pain are constructed as things to be dominated (Grosz, 1992; Reeve, 2002). This influenced the affective nature of illness for our participants, given that they sought to project an illness experience that aligned with those norms, even though their illness experience did not.

In the elaborate practices of concealment in young people’s worlds, concealment is not merely hiding the existence of illness, but rather, it is downplaying the specter of fear, vulnerability, and uncertainty that is persistently present. These often exhausting attempts to bury the emotional toll of chronic illness were themselves an ongoing and building source of pain in participants’ lives. Finding ways to live well with illness was a struggle—a struggle compounded by the economic, medical, and social barriers to receiving care that exist for all with chronic illness, and especially for those at the intersection of other minoritized identities (Boulton, 2019; Conrad & Barker, 2010; Frickel et al., 2010; Knoebel et al., 2021; Mullard et al., 2024; Sebring, 2021).

What is the path ahead in terms of bringing youth chronicity and practices of concealment and recognition to the fore? Building on these accounts, and by incorporating broader lived experiences of chronic illnesses, we can begin to tease out and give better supports to adolescents and young adults who fall outside the expected trajectories and priorities of youth. The expectation that others did not have an understanding of, or interest in, the consistency yet changeability of what chronic illness means to life was one of the key reasons that young adults did not trust others to engage with them in a conversation about chronic illness. The normative belief that two things cannot be true at once—whether that be grief and joy, relief and frustration, hope and resignation—created an urge to conceal the life of contradictions that a youth with chronic illness can feel like and be. This dynamic was ever-present, but not ubiquitous, and participants’ stories of finding those who could react appropriately and supportively demonstrated the potential for these exchanges to be enormously meaningful and helpful. Increasing awareness of the concerns outlined in this paper is an important foundation for promoting recognition, and providing support, for those living with chronic illness.