Navigating the Limits of Diagnosis: Young Adults' Experiences of Chronic Living.

Imogen Harper: conceptualisation (lead), investigation (lead), writing–original draft (lead), writing–review & editing (lead). Katherine Kenny: conceptualisation (supporting), supervision (supporting), writing–review & editing (supporting). Alex Broom: conceptualisation (supporting), supervision (lead), writing–review & editing (supporting).

Ethical approval was granted by the University of Sydney Human Research Ethics Committee (protocol number 2022/521).

The authors have nothing to report.

This paper comes from a research project with the overarching aim of exploring young adults' experiences of chronic illness, with a particular focus on how ‘being young’ can shape the way people receive care, maintain relationships and understand the politics of illness and disability. The research questions motivating this study were How do young adults understand chronic illness, disability and impairment? How do young adults navigate their life with and around their chronic illness? How does the digital environment influence young adults' experience and understanding of their health? What do young adults want to see change about how individuals, society and institutions respond to chronic illness? How do young adults understand chronic illness, disability and impairment? How do young adults navigate their life with and around their chronic illness? How does the digital environment influence young adults' experience and understanding of their health? What do young adults want to see change about how individuals, society and institutions respond to chronic illness? In investigating these questions, the role of diagnosis in our participants' lives—as process and as category—became clear. This article therefore aims to examine the role and meaning of diagnosis for young people living with chronic illness. To do this, we consider how young people make sense of their experiences living with chronic illness, and the highly variable role that diagnosis can play throughout this. After we obtained ethics approval from the University of Sydney Ethics Committee, [HREC 2022/521] recruitment materials were distributed both in‐person and online. Potential participants could either fill out an online form with their contact details or email IH directly. Once a potential participant expressed interest, they were emailed a copy of 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. If they still wished to participate, a time and place for the interview were organised to maximise convenience for the participant. When in person, the PCF was printed and signed before commencing the interview, while participants returned a soft copy of the PCF before online interviews. We conducted 33 semi‐structured interviews with young adults living in Australia with one or more chronic health conditions. Eighteen participants were recruited through physical flyers in community settings, four participants through physical flyers in a specialist's waiting room, seven through an advertisement on “research” pages of relevant organisations' websites, one through a social media post and three from having the flyer passed on to them by a nonparticipant. Recruitment materials were deliberately broad when identifying who could participate in this study. They 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.” Recruitment materials listed a range of potential conditions as illustrative, not as instructive. We chose to keep the inclusion criteria broad because the social construction of illness affects people with a range of conditions. The criteria also reflect that many people with a variety of conditions see themselves as part of a broader community (Swoboda  2008 ). In this sense, we “relied upon the participants' own construction of chronic illness and the way it impacted upon their lives” (Kralik, Price, and Telford  2010 , 199). Reference to a “unified condition” was intended to speak 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 ). We particularly did not want to exclude people who had stopped seeking a diagnosis due to factors such as financial strain, bad experiences with medical professionals or other frustrations. This was especially important to us given that people at the intersection of overlapping forms of marginalisation (e.g. due to racial or ethnic background, gender or social class) may be most likely to experience forms of discrimination or judgement in medical settings, potentially denying them a diagnosis and/or causing them to avoid these interactions in future (Sebring  2021 ). We hypothesised that the experiences of people who do not have their physical condition explained by a diagnosis would have instructive similarities and differences with the experiences of those who do, and we also wanted to affirm that the boundary between people who have diagnosed and un‐diagnosed conditions is unstable (Mollow  2014 ). Four participants had not received a diagnosis for their symptoms at the time they registered their interest in the study. Others had a diagnosis which explained some of their symptoms but not others. In all these cases, participants reflected on their surprise and joy in seeing that their situation was of interest to researchers. Participants were aged 19–29 years‐old, with an average age of 23 years‐old. Nine participants identified as cis‐men, one as a noncis man, and 23 as cis‐women. Three participants identified across multiple different illness groups—this is reflected in Table  1 , where the total number of participants appears higher than the 33 interviewees. Seven participants had gone to either primary or high school outside Australia and eight had grown up and/or currently lived outside a metropolitan area. The data excerpts that appear below are accompanied by participant's ID number, age bracket, gender identity (female or male) and illness type. We have chosen to convey demographic information in this way in order to maintain a careful balance between useful contextual information and the need to preserve anonymity. Overview of the chronic illnesses participants lived with. Endometriosis Polycystic ovarian syndrome (PCOS) Adenomyosis Premature ovarian insufficiency (POI) Neuro‐immune conditions Neuro‐endocrine conditions Brain injuries, vestibular issues and chronic migraines Epilepsy Fibromyalgia Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) Postural orthostatic tachycardia syndrome (POTS) Hypermobile Ehlers–Danlos syndrome (hEDS) Mast cell activation syndrome (MCAS) Undiagnosed syndromes with similar symptoms to above auto‐immune arthritis Hypothyroidism Inflammatory bowel disease (IBD) Type 1 diabetes Auto‐immune skin conditions (e.g. eczema and psoriasis) Interviews were conducted either face‐to‐face (19) or via video call (14) between March 2023 and February 2024. Interviews were semi‐structured, conducted by IH, and lasted between 53 and 110 min. Interviews were audio recorded and fully transcribed. The interview schedule was structured around three themes: experiences of health and illness; care; and relationships. The interviews began with a discussion of someone's current health concerns or management strategies (“How is your health at the moment?”), which was used as a foundation for discussion about how that came to be, and how they thought about their futures. Feelings surrounding diagnosis (as it existed as a process and as a category) were explicitly asked about. This included questions such as “at what point did you start thinking you might have [condition]?”, “what was the process of getting that diagnosis?”, “how did it feel to receive that diagnosis?” and “how has receiving/not receiving this diagnosis changed things for you?” Space was given for participants to tell stories that they saw as important, and for them to construct their experiences through narrative. Allowing interviews to at times take on a narrative form was important because for many people stories can be a powerful tool to strengthen their sense of self when dismissed, attacked or trapped by prevailing narratives (Thomas  1999 ). Open‐ended questions were used to assume as little as possible about the life, experiences and feelings of the individual being interviewed (Charmaz  1990 ). Data collection and analysis were conducted concurrently. First, utilising an inductive interpretative analysis based on constructivist grounded theory (Charmaz  1990 ; Charmaz and Belgrave  2012 ), IH (re)familiarised herself with the transcripts by mapping out the social, relational and discursive elements of each interview (Clarke  2003 ; Clarke and Friese  2007 ). This involved writing memos which outlined the ideas that had come up in each interview, described how those ideas were connected and considered why they might be important for conceptual frameworks of chronic illness. Second, IH developed descriptive categories to represent the themes present in interviews. Third, all authors analysed this categorised data in order to develop theoretical ideas and concepts that would form an overarching conceptual basis for the paper. Rigour was ensured foremost by the internal review of our conceptual categories, our analysis and our writing. All authors contributed to the writing and editing of analytical frameworks and analysis, which confirmed that the work resonated with all authors' interpretation of the data and reflected ongoing dialogues. In all analytical steps, care was taken to maintain the richness and complexities of participants' experiences, which included attending to and highlighting atypical cases and contradictions which arose both between, and within, interviews (Charmaz  1990 ; Clarke  2003 ). Throughout, we would return to the literature to re‐visit which theoretical tools could be useful for explaining and representing the themes identified (Ezzy  2002 ).

All participants had been attempting to understand and manage symptoms prior to their diagnosis, which often involved the frustration and invalidation predicted by existing sociological literature (Boulton  2019 ; Dumit  2006 ; Mullard et al.  2024 ; Nettleton  2006 ; Werner and Malterud  2003 ). In many cases the eventual diagnosis was not entirely unexpected, somewhat relieving, but in turn entangled with feelings of frustration: They didn’t even apologise for the fact that they refused to do an MRI for like 7 years. […] I told [my family], ‘ok, I finally have an explanation for what is going on with me, and there’s a way to try and fix it. I’m happy.’ So, I was happy at the fact they figured out what was wrong with me. I was still angry a bit. (P372, 26–29, female, neurological condition) They didn’t even apologise for the fact that they refused to do an MRI for like 7 years. […] I told [my family], ‘ok, I finally have an explanation for what is going on with me, and there’s a way to try and fix it. I’m happy.’ So, I was happy at the fact they figured out what was wrong with me. I was still angry a bit. In line with the recent paper from Jeske, James and Joyce ( 2024 ) which explores how diagnosis is just one moment in patients' broader narratives of illness, our participants often described their relief at receiving a diagnosis as directly related to their past experiences of diagnosis being denied. Participants' responses reflect that in many ways what they were relieved from was their frustration at not having their suffering acknowledged and the self‐doubts which came from the frequent scepticism of doctors: I think it’s more or less relief. I think that part of you is starting to just sort of think ‘maybe I am making this up in my head, maybe I am going crazy, am I just wanting the strong painkillers in the hospital? Maybe this is just normal pain for everyone else.’ Sort of: what’s going on? So it really validated my own feelings. I wasn’t really happy about it, but I also wasn’t sad. I was just sort of relieved that I knew what was going on, and it’s like, at least it’s something, and something that explains why I am feeling the way I am feeling. (P419, 26–29, female, IBD) I think it’s more or less relief. I think that part of you is starting to just sort of think ‘maybe I am making this up in my head, maybe I am going crazy, am I just wanting the strong painkillers in the hospital? Maybe this is just normal pain for everyone else.’ Sort of: what’s going on? So it really validated my own feelings. I wasn’t really happy about it, but I also wasn’t sad. I was just sort of relieved that I knew what was going on, and it’s like, at least it’s something, and something that explains why I am feeling the way I am feeling. In a practical sense, diagnosis was often what allowed medical treatment to progress. Participants reported a sense of empowerment from accessing treatment, in part because it relieved them from the guilt of not “doing enough”: As soon as I had a diagnosis I felt like there was something I could do about it. Because I think that was one of the frustrating things, worrying that I wasn’t doing enough or that I wasn’t doing anything to help myself or help my body. (P783, 22–25, female, endometriosis) As soon as I had a diagnosis I felt like there was something I could do about it. Because I think that was one of the frustrating things, worrying that I wasn’t doing enough or that I wasn’t doing anything to help myself or help my body. The meaning of a diagnosis therefore came from what participants had been denied when without one: legitimacy, care and treatment (Jutel  2011 ; Jutel and Nettleton  2011 ). Relief and even happiness came largely because participants knew that a lack of diagnosis had stopped them receiving what they needed, rather than because they themselves desired a diagnostic label. In that sense, the feeling that diagnosis should or did ‘solve’ a problem came from the fact a biomedical and cultural emphasis on diagnosis made one a requirement for receiving care and gaining legitimacy. This formed the foundation for one issue that arose throughout participants' illness experiences: interpersonal and emotional tensions emerged when the expectation was that diagnosis would equate to success and stability, but the reality was that one's diagnosis only addressed very specific aspects of their illness experience. While relief was the response for participants who had been experiencing growing frustrations at both their symptoms and their lack of explanation for them, in situations where participants described themselves as having been in some way avoiding confronting their symptoms, they reported a similar sense of emotional paralysis and numbness when they were given a diagnosis: I was in that weird mode of not really engaging with it when I developed the symptoms… that kind of ramped up even more when I had that appointment with the doctor who told me it was [condition]. And then from there, for the next couple of months I was kind of just in a completely detached kind of thing… (P145, 26–29, male, neuro‐immune condition) I was in that weird mode of not really engaging with it when I developed the symptoms… that kind of ramped up even more when I had that appointment with the doctor who told me it was [condition]. And then from there, for the next couple of months I was kind of just in a completely detached kind of thing… Likewise, where participants were struggling to believe that they could be experiencing a physical illness, a doctor's diagnosis did not mean that they could suddenly and easily claim that pathology. This was explained by one 19–21 year‐old who had been diagnosed with CFS/ME but still found himself preoccupied by the thought that he might just have a life that was more exhausting than his peers. He described himself as having reached “the point where there is no other option than to just accept that I have a fatigue syndrome and that I need to take steps to work within that.” In this interview, the participant's choice to describe his condition as “a fatigue syndrome” seemed to be a clear, if subconscious, discomfort with medical diagnostic nomenclature, and the certainty around physical illness it implies. His diagnosis, which he reported accepting as a pragmatic decision of last resort, did little if any of the work needed to think through what ill health meant for his identity and life choices. In this sense, diagnosis was not capable of doing the emotional work of living well with illness for someone—coming to terms with illness, and learning to live well with it, were actions that could begin pre‐diagnosis, or could come significantly after diagnosis. At best, diagnosis allowed practical interventions and confirmed that participants were, as they suspected, experiencing symptoms of physical illness. Years after receiving their diagnoses, participants reported that they were still struggling with unanswered questions. It quickly became clear to participants that the promise of medical mastery which came with diagnosis was not going to eventuate, and the letdown of diagnosis caused additional emotional pain. Participants often felt that they could not query the terminology or medical implications of their diagnosis. One participant described her apprehension about voicing her confusion at how a diagnosis of “mild” IBD related to her broader experiences of ill health, which appeared to result in continued uncertainty and feelings of misrecognition: It’s meant to be quite mild, I’m on mild medication. So that’s something I’m still quite confused about because my fatigue, and my other symptoms that aren’t gut related seem so severe compared to having a mild… yeah, not sure. (P563, 26–29, female, IBD) It’s meant to be quite mild, I’m on mild medication. So that’s something I’m still quite confused about because my fatigue, and my other symptoms that aren’t gut related seem so severe compared to having a mild… yeah, not sure. The feeling of being letdown by diagnosis also came from the fact that diagnoses often did not come with clear treatment regimens or prognostic trajectories. This suggests that Boulton's ( 2019 ) argument that a fibromyalgia diagnosis is sometimes an “empty promise” (817) also speaks to some elements of many other chronic illness diagnoses, as our participants reported similar feelings in relation to illnesses that did show up, undeniably, in biomedical tests. One participant, who was quoted above remembering the feeling of relief that she could “do something” about her endometriosis when she was first diagnosed, explained that she was now struggling with her frustration at the fact there was “no rhyme or reason” to her pain, and that there was “nothing you can do to help yourself in [my] situation.” The confusion of illness post‐diagnosis was made worse by the fact that participants initially felt they had gained an organising structure to understand their health, only to find that diagnosis answered very few of the questions they had about chronic living in their day‐to‐day lives. While participants were managing their own sense of betrayal at the failure of a diagnosis to thoroughly explain their situation to themselves, diagnosis also did not provide an easy way to communicate the realities of ill health to others. Participants continued to be concerned that debilitating symptoms, like fatigue and pain, might just be seen as something many people experienced: I was like crying in the car, thinking, ‘what is this? Why can’t I move my body because of some random thing called [condition] which no one can help with apparently, it’s just something I have?’ It was like someone had cursed me. And I had to call the [school] and be like, ‘sorry I can’t do [my commitment], because I can’t move.’ And they were like ‘why?’ and I was just like ‘because I have bad skin.’ Like what? (P289, 22–25, male, auto‐immune condition) I was like crying in the car, thinking, ‘what is this? Why can’t I move my body because of some random thing called [condition] which no one can help with apparently, it’s just something I have?’ It was like someone had cursed me. And I had to call the [school] and be like, ‘sorry I can’t do [my commitment], because I can’t move.’ And they were like ‘why?’ and I was just like ‘because I have bad skin.’ Like what? Given these letdowns, some participants reported scepticism about the importance others placed on diagnostic labels as a tool for understanding illness experiences. In one illuminating case, despite the participant's diagnosis with auto‐immune arthritis leading to quick and ongoing therapeutic intervention, the details of her diagnosis were not well understood by (otherwise supportive) family members, and they were also not of much interest to the participant herself. She expressed frustration at others' expectations that a diagnosis would contain all the answers, and indeed expressed caution about those who were interested in her diagnosis, since she did not want it to be used to make assumptions about her experience: I was diagnosed with rheumatoid arthritis, or some sort of arthritis, I can’t really remember my diagnosis. […] It’s just an umbrella term for so many other things. So when people ask, ‘which one do you have?’ I’m like, ‘girl, I don’t know either.’ [But] even if I give you the name of the diagnosis, what are you going to do with it? Fit me into that box? (P677, 19–21, female, auto‐immune arthritis) I was diagnosed with rheumatoid arthritis, or some sort of arthritis, I can’t really remember my diagnosis. […] It’s just an umbrella term for so many other things. So when people ask, ‘which one do you have?’ I’m like, ‘girl, I don’t know either.’ [But] even if I give you the name of the diagnosis, what are you going to do with it? Fit me into that box? In a cruel irony, participants' emotional discomfort surrounding the role of diagnosis could also come from friends and family adapting their behaviour post‐diagnosis. This was interpreted by participants as revealing that a medical diagnosis was necessary for them to be believed even by loved ones, despite the fact they had been reporting their symptoms for years: I’m like, ‘oh ok, nice to know [about the diagnoses].’ But my parents are like, ‘oh my God, what’s going to happen?’ All this stuff, when it’s… it’s interesting, because I’ve been living with the same, living with these symptoms, for so many years [… but] now they know it’s quote unquote ‘real’ they’re always asking about it. […] Every single day my parents are like, ‘How are you? How’s your back? Don’t unload the dishwasher, we’ll do it for you.’ That kind of stuff. (P811, 19–21, female, auto‐immune arthritis and degenerative spinal injuries) I’m like, ‘oh ok, nice to know [about the diagnoses].’ But my parents are like, ‘oh my God, what’s going to happen?’ All this stuff, when it’s… it’s interesting, because I’ve been living with the same, living with these symptoms, for so many years [… but] now they know it’s quote unquote ‘real’ they’re always asking about it. […] Every single day my parents are like, ‘How are you? How’s your back? Don’t unload the dishwasher, we’ll do it for you.’ That kind of stuff. A frustration at others' preoccupation with diagnosis also existed for those who did not yet have a diagnosis, where the pressure from others to keep looking for answers was significant and unwanted: I don’t talk to [my parents] as much, because they sort of just stress me out rather than be helpful. Because they are concerned because they are like ‘what’s going on with you? We’ve got to try and figure it out.’ I think their reaction is to over research and always send me articles. […] I just don’t want to be constantly thinking about it. (P931, 19–21, male, fatigue and dysautonomia, no diagnosis) I don’t talk to [my parents] as much, because they sort of just stress me out rather than be helpful. Because they are concerned because they are like ‘what’s going on with you? We’ve got to try and figure it out.’ I think their reaction is to over research and always send me articles. […] I just don’t want to be constantly thinking about it. All this suggests an ongoing and frustrating tension between the internal work young adults do to live with their illness, and the medical and cultural expectations about the worth and role of diagnosis as a tool for understanding illness experiences. These tensions between the clarity promised by diagnoses and the far more unstable reality of living with chronic ill health seemed to embed in our participants a general feeling of uncertainty and cause an apparent sense of ambivalence towards medical care and concern from others. The failure of diagnosis to provide clarity increased feelings of intractable precarity, which in turn limited many participants' patience for people in their lives who did not appreciate their ongoing and consistent confrontation of unpredictability and hopelessness. Amongst these questions around the role of diagnosis, participants found other ways to understand their experience of illness. While medical diagnoses may seek to define the contours of illness, a diagnosis is a static label, while the life it categorises is ever evolving. The way in which diagnoses were sidestepped when coming to terms with illness varied. For some participants, there was real pain when confronting the failure of a diagnosis to help them consider their life and identity more broadly: Even after I got diagnosed and I learnt that there was a reason for all this stuff, and that it wasn’t my fault, it was only then that I realised I thought it was. I still had this – because in one sense, I was right, my whole life, I grew up thinking there was something really wrong with me, that I was something awful, and I was like ‘yeah, I told you.’ […] It’s not like suddenly my self‐esteem is fine, or suddenly I didn’t feel like I was at fault in some way. […] How much of me, how much of the amount I struggled with just life stuff is because of [diagnosis] and fatigue, and how much is just because I’m a piece of shit? Sorry. But yes, that thing of, I don’t even know if I’m… where does the [condition] start, or [condition] end and I start? (P145, 26–29, male, neuro‐immune condition) Even after I got diagnosed and I learnt that there was a reason for all this stuff, and that it wasn’t my fault, it was only then that I realised I thought it was. I still had this – because in one sense, I was right, my whole life, I grew up thinking there was something really wrong with me, that I was something awful, and I was like ‘yeah, I told you.’ […] It’s not like suddenly my self‐esteem is fine, or suddenly I didn’t feel like I was at fault in some way. […] How much of me, how much of the amount I struggled with just life stuff is because of [diagnosis] and fatigue, and how much is just because I’m a piece of shit? Sorry. But yes, that thing of, I don’t even know if I’m… where does the [condition] start, or [condition] end and I start? For this participant, diagnosis was unhelpful in his consideration of identity questions about what in his life was attributable to his condition and what was attributable to his own ‘self’. Indeed, after being equipped with the supposedly helpful explanatory tool of a diagnosis, this participant instead felt like his diagnosis justified his belief that he was “something awful”, as it was confirmation that there was something in him that was inherently “really wrong”. While a diagnosis was necessary for him to receive life‐saving treatment, learning to live well with chronic illness was in fact made harder by the failure of diagnosis to live up to his subconscious expectations. When diagnosis did not offer relief from some of the more existential questions of chronic living, participants found other ways to make sense of their complex life. The below example comes from an interview where the participant had described how his diagnosis of auto‐immune arthritis and degenerative spinal injuries as a teenager had done little to help him come to terms with his new lived reality. He explained though that, now as an adult, he found himself focusing on the idea of pain, and chronic pain, to articulate and understand his condition: It’s easy to fight one issue at a time, but the nature of chronic pain and chronic health is that it suddenly makes everything more difficult. […] I saw this weird thing where it’s like, people write down what they’re afraid of or what their goals are, and suddenly it’s a lot more tangible, a lot more achievable, or you’re not as afraid or daunted by it. And I think metaphorically it’s the same for me with pain. It’s all it is, is pain. […] To the extent that it’s just pain – just pain, that’s all it is – you can start to compartmentalise it and just be a bit more hardened to it. (P742, 22–25, male, auto‐immune arthritis and degenerative spinal injuries) It’s easy to fight one issue at a time, but the nature of chronic pain and chronic health is that it suddenly makes everything more difficult. […] I saw this weird thing where it’s like, people write down what they’re afraid of or what their goals are, and suddenly it’s a lot more tangible, a lot more achievable, or you’re not as afraid or daunted by it. And I think metaphorically it’s the same for me with pain. It’s all it is, is pain. […] To the extent that it’s just pain – just pain, that’s all it is – you can start to compartmentalise it and just be a bit more hardened to it. Similarly, a participant who was diagnosed with CFS/ME as a child spoke about her experiences growing up with little attention to when she was diagnosed or started receiving treatment, despite going through many specialists and a paediatric programme at a major hospital. She remembered her ongoing disconnect with the way her parents saw illness as something currently weighing on her and which needed to be removed, rather than a part of who she was: I think I always knew deep down that this was just a reality. And [my parents] would always say, ‘this is just the winter of your life’, but I was like, ‘is it?’ I don’t want to let this define what the seasons of my life are. I always saw my life as within my illness, but they always saw my illness as just a little pothole, that we would, you know, just get out of. So they had to go through a lot of grief. And they tried to come up with a lot of theories, and they did a lot of problem solving […] but I just never really cared, because for me it wasn’t about why or how to get better, it was just about living within it. (P278, 19–21, female, CFS/ME) I think I always knew deep down that this was just a reality. And [my parents] would always say, ‘this is just the winter of your life’, but I was like, ‘is it?’ I don’t want to let this define what the seasons of my life are. I always saw my life as within my illness, but they always saw my illness as just a little pothole, that we would, you know, just get out of. So they had to go through a lot of grief. And they tried to come up with a lot of theories, and they did a lot of problem solving […] but I just never really cared, because for me it wasn’t about why or how to get better, it was just about living within it. The way in which this participant decentred diagnosis demonstrates that individuals can make sense of their illness experiences in ways which do not represent the biomedical model of disease and medicine (Clarke et al.  2003 ). As Eisenberg ( 1977 ) and Rosenberg ( 2002 ) have described, diagnosis is key in these models as it both constructs the ‘disease’ as an entity which is separate from the person who is sick and justifies expert medical management and treatment. For this participant, however, illness remained inseparable from her life and sense of self post‐diagnosis, which she was at peace with. Finally, for the participant who had been living with various symptoms of fatigue and dysautonomia for about 12 months, diagnosis seemed unlikely—he described his condition as “probably something psychosomatic.” Instead, “trial and error”, even in the absence of a diagnosis, constituted meaningful steps towards managing his health. This went along with deprioritising the desire for a diagnosis that might not, ultimately, serve him: I just go, ‘you know what, we don’t actually know what’s going on, we just sort of got to ride the wave, you have your good days, you have your bad days.’ Which I think is the best approach. […] There’s nothing I can do more of to change it. I’m taking all the steps. I’m not just saying ‘oh I’m sick’ and letting it happen to me. I’m going to the doctor, I’m eating healthier, I’m taking iron tablets, sleeping more, I’ve reduced my workload to account for that, seeing my therapist, I’m doing all these steps. It’s not fully getting better but there’s nothing more I can do. So I just make peace with that fact. […] It was a difficult process, but trial and error has got me to a better point. (P931, 19–21, male, fatigue and dysautonomia, no diagnosis) I just go, ‘you know what, we don’t actually know what’s going on, we just sort of got to ride the wave, you have your good days, you have your bad days.’ Which I think is the best approach. […] There’s nothing I can do more of to change it. I’m taking all the steps. I’m not just saying ‘oh I’m sick’ and letting it happen to me. I’m going to the doctor, I’m eating healthier, I’m taking iron tablets, sleeping more, I’ve reduced my workload to account for that, seeing my therapist, I’m doing all these steps. It’s not fully getting better but there’s nothing more I can do. So I just make peace with that fact. […] It was a difficult process, but trial and error has got me to a better point. In line with Coffey and Farrugia's ( 2013 ) conceptualisation of agency as a “generative process” (470) that young people engage in to find a ‘self’ amongst social, structural and institutional forces, the above passages demonstrate our participants' growing ability to find their self amongst both their embodied experience of illness and the expectations about illness that surrounded them. The assumption that diagnosis would make this process easy could, in fact, be disruptive to a more organic consideration of the meaning in one's individual experience of illness. For our participants, frustration at others' preoccupation with diagnosis came, in part, from their own disappointment with the fact that diagnosis did not have all the answers, and a subsequent disconnect between the expected and actual experience of illness. This disappointment is an important component of what people live through, as is the subsequent work they do to build a contrasting set of values and beliefs. Beyond this though, the stories that emerge of living well with chronic illness offer insight into how, particularly at an age of broader identity work, ill health can be integrated into a sense of self.

Since the biomedical turn of the 20th Century (Clarke et al.  2003 ), medical diagnosis has been the predominant mode for defining, analysing, and predicting bodily pathology and dysfunction (Eisenberg  1977 ; Rosenberg  2002 ). This coincided with the rise of chronic illness as a sphere of escalating significance, and relatedly, as a site of considerable contestation (Manderson and Wahlberg  2020 ). Sociological literature on the disruption that chronic illnesses can cause in individual lives has established a conceptually rich foundation for research that centres the lived experience of those at the heart of unstable and liminal medical, political and social spheres (Bury  1982 ; Charmaz  1983 ; Conrad and Barker  2010 ; Frank  1995 ). This chronic turn reflects the changing dynamics of “global health” and the growing “burden” of chronic disease (Kenny  2015 ), along with the rise in social and political movements which see various chronic conditions, and chronic illness itself, as a cultural category deserving of attention (Brown et al.  2004 ). The “kinds of living” (Wahlberg  2009 ) brought about by chronic illness have been shown to be contingent upon both societal ideas around illness and the specific circumstances of each individual (Manderson and Wahlberg  2020 ). Living with chronic illness—what Maderson and Wahlberg ( 2020 ) term “chronic living”—involves significant work both in regards to health‐management and in regards to emotionally coming to terms with the implications of illness for one's life and identity (Corbin and Strauss  1985 ; Mattingly, Grøn, and Meinert  2011 ). The relationship between health and identity that is created in the context of chronic illness can go beyond the inclusion of one's diagnosis in their understanding of self. For example, other ways of being ‘healthy’ can become extremely important to those fighting against the stigma of ill health (Monaghan and Gabe  2016 ). Many experiences of illness continue to be in some way contested, including through diagnostic criteria and policy, and in regards to the ways in which they are understood or dismissed in social and medical discussions (Dumit  2006 ; Moss and Teghtsoonian  2008 ). These tussles deeply impact illness experiences, and in the case of chronic health conditions, the absence of clear trajectories for cure or decline can stigmatise and de‐centre the everyday lives of those managing these poorly understood illnesses, which can in turn trigger a sense of identity loss (Broom et al.  2015 ; Charmaz  1983 ; Mullard et al.  2024 ). Much of the social science literature on chronic illness has predominantly focused on the latter parts of the life course (Frank  1995 ; Hajat and Stein  2018 ; Prince et al.  2014 ). Despite this, there is a very real, and increasing, burden of chronic illness for youth (Perrin, Anderson, and van Cleave  2014 ; Rosen, Dhawan, and Saeed  2015 ). This disrupts many normative ideas about chronicity, and young people seeking to achieve a formal diagnosis are often challenged both by medical professionals and other adults with authority, such as parents and teachers, when they do not fit the normative model of sickness (Monaghan and Gabe  2019 ; Werner and Malterud  2003 ). Previous research on the experience of young people with chronic health conditions has demonstrated the ways in which particular precarities, anxieties, and dependencies of youth inflect the experience of illness (Gabe and Monaghan  2023 ; Monaghan and Gabe  2015 , 2019 ; Poku and Pilnick  2022 ; Polidano et al.  2020 ). This mirrors other literature which demonstrates that chronic illness is not always disruptive—it can also be anticipated, expected or part of a biographical flow (Faircloth et al.  2004 ; S. Williams  2000 ). In the case of young people, the life‐stage at which a condition develops can also result in a sense (or observation) that one has always been ill, which can further differentiate the experience of chronic illness when young from the acute disruption someone older may face (Poku and Pilnick  2022 ; B. Williams et al.  2009 ). Where illness does develop in adolescence or young adulthood, some research suggests that young people can re‐form their lives to empower themselves within illness, and reconfigure their sense of self around a positive narrative (Heaton, Räisänen, and Salinas  2016 ; Polidano et al.  2020 ). The sociology of youth can provide useful insight into how young people's experiences of chronic illness are reflective of other, broader experiences of youth. Specifically, we are interested in how youth is a period where structure and agency are continually renegotiated (Coffey and Farrugia  2013 ; Pais  2022 ). We examine how these structural potentials and inclinations of youth entwine with broader contestations around chronic illness. The onset of illness can trigger serious re‐evaluations of who one is and what their life can be—questions which are often thought through with the help of various forms of stories (Frank  1995 ). Diagnosis is a part of this, given that it both structures medical interactions up until the point of diagnosis, and then promises a series of future experiences and actions once diagnosis has been achieved (Blaxter  1978 ; Jutel  2011 ). However, as Jain ( 2007 ) has described in relation to cancer prognoses, the futures that medical literatures predict exist in a state of abstraction that can never be sustained at an individual level, revealing a deep tension between the supposed certainty of scientific data and the actual uncertainty of life. In short, diagnosis and prognosis can raise more questions than they answer. Social science literatures have identified the various roles that diagnosis has in medical, cultural and academic spheres—diagnosis and diagnoses are categories, events, processes, topics of inquiry and ways of making sense of illness (Blaxter  1978 ; Jutel  2011 ; Jutel and Nettleton  2011 ; Weinberg  2020 ). For people in their everyday lives, these different meanings and roles cannot be neatly divided and distinctly managed—diagnosis moves between, and is, all these things. One thing diagnosis does is define and delimit what is considered normal rather than pathological, therefore imposing meaning on otherwise ill‐defined suffering, placing one within an expected narrative, and giving one access to treatment and benefits (Jutel  2011 ; Jutel and Nettleton  2011 ; Nettleton  2006 ). Relatedly, the majority of scholarly work in the social sciences has explored chronic conditions with participant populations who identify with a discrete diagnostic category (e.g. rheumatoid arthritis or epilepsy) based on medical assessment (Cluley et al.  2021 ). Diagnosis does not, however, always live up to its promised potential for clearly categorising illness experiences and therefore offering respite from the anomie of ill‐defined ill health. In some cases, a diagnosis can make patients acutely and reasonably concerned about the ongoing consequences of past medical encounters where a diagnosis was ‘missed’ (Ghai et al.  2020 ; Jain  2007 ; Uher et al.  2023 ). Not only this, but the uncertainty which may have surrounded the initial process of diagnosis can make patients ambivalent towards their eventual diagnostic label, in part because of the fear that the current label will limit their ability to seek further help (Boulton  2019 ). This speaks to the various ways that the diagnostic process impacts the broader experience of illness and patienthood (Jeske, James, and Joyce  2024 ). Further, patients may actively and strategically continue to use different categories of diagnosis (e.g. “autoimmune” compared to “multiple sclerosis”) to make sense of their experiences (Joyce and Jeske  2020 ). This article builds on this recent literature as it sees diagnosis as not only a constructed category imbued with cultural meaning but as a category that can be unstable in everyday life, with shifting boundaries and domains (Jutel  2015 ).

As social science scholarship has regularly shown, chronic illnesses, in all their varieties and complexities, have a tendency to unsettle, unravel and/or redefine an individual's lifeworld. Chronicity can cast difficult questions over one's past, present and futures, very often reordering life and self (Bury  1982 , 1988 ; Charmaz  1983 ; Frank  1995 ). Diagnosis may be one way of “bind[ing] the biological, the technological, the social, the political, and the lived” (Jutel  2011 , 13), but, for our participants, it did not succeed in creating a stable and satisfactory bundle. For our participants, the power and potency of diagnosis was often eclipsed by their own personal understandings of illness that they utilised to live well in the day‐to‐day. Participants' descriptions of coming to terms with their various experiences of chronic living sat somewhat separately to their discussion of the role of diagnosis in their lives, with the two converging at points but diverging at others. In interviews, diagnosis was most often discussed as one tool to access practical help, rather than as an essential point of validation or even a particularly useful explanatory lens. While a lack of diagnosis had often diminished the ability of participants to receive treatment and had increased their feelings of chaos when symptoms were unexplained and unpredictable, diagnosis was often unhelpful, and at times stifling, in participants' ultimate “quest” to transform their illness into something emotionally and socially manageable (Frank  1995 ). Our participants' experiences provide further evidence, and additional depth, to the scholarship of the sociology of diagnosis, including a further understanding of how “diagnosis is simultaneously a place of contest and of consensus” (Jutel  2015 , 20). For the participants in this study, the work of chronic living (Corbin and Strauss  1985 ; Manderson and Wahlberg  2020 ) came in part from navigating how diagnosis was perceived and portrayed as the achievement of clarity, but, for them, actually still carried questions and doubts. This draws further attention to our need to be aware of how “the diagnostic moment sidelines the temporal aspect of living with illness” (Jeske, James, and Joyce  2024 , 226). We add to this that it is not only that the diagnostic journey influences how one experiences illness but that the emotional expectations one held about diagnosis, and the expectations others continue to hold about diagnosis, also have an ongoing influence. For our participants, the “structure” (Jutel  2011 , 13) that diagnosis provided to an illness experience could be both limiting and disappointing. Tensions arose between the stasis of medical diagnostic categories and the dynamic unfolding of these young people's lives. Put differently, the static‐ness of diagnosis could not accommodate the evolving and vital world/body. When we speak about static electricity, we are talking about currents that do not flow as they should, and it is this lack of movement that creates disruption and noise in electrical systems, creating the static we hear or (historically) see. This same irony exists for diagnosis. A diagnosis (or a desired diagnosis) can loom over people, unable to shift as needed when various challenges emerge and evolve. This static‐ness was routinely experienced by participants as disruptive to their ability to communicate with others, and as an interference in their relationships as they tried to understand what illness and pain meant to them. This offers a broader perspective on the ways in which an (over)emphasis on diagnosis can lead to emotionally difficult clinical interactions (Boulton  2019 ; Jutel  2011 ; Nettleton  2006 )—too much attention to diagnosis can also diminish the perception and success of care in many other social encounters. Our participants still found ways to navigate the contested yet biomedically celebrated experience of diagnosis. They sought to strategically distance themselves from the unhelpful structures of diagnosis and reported that the emotional work they did for their own sense of self was separate from the work they undertook to receive a diagnosis. In our interviews, it became clear that young people can respond to the instability of chronic illness with important and creative adaptations of traditional illness narratives, reflective of how youth can be a time of finding agency amongst previously controlling social and institutional structures (Coffey and Farrugia  2013 ; Pais  2022 ). For our participants, their consequent “self‐directed transformation” (Deegan  2001 ) was an important part of their chronic living. By examining the ways that young adults do (and do not) talk about their diagnoses, we can see that one important response to the various shortcomings of diagnosis is to decentre it from their illness narrative entirely. As participants moved away from their diagnoses as a defining component of their illness story, new paths, parallel to medical interactions, emerged as a way to make sense of their own ill health and incorporate it into their understanding of self. By listening to the testimony of people with a wide variety of chronic health conditions, who each have different relationships with diagnostic labels and varied diagnostic trajectories, this study can look beyond traditional categorisations of illness experiences and instead begin to examine the tensions and possibilities which arise in the grey areas of illness and medicine. This complements previous research that has looked to symptomatic experiences rather than diagnostic groupings to think about what specific physical and emotional experiences within illness impact one's life and identity (Cluley et al.  2021 ). While this structure is useful for seeing what happens beyond diagnosis, there are also particularities which are missed in a broad study such as this one—even in this sample it was clear that, in some cases, there are important shared experiences of people who do have the same diagnosis, or alternatively, of people who sit together in some other category such as gender, race, migration history or socioeconomic class. With this in mind, the above findings are instructive for the family members, friends and loved ones of young adults living with chronic illness. Diagnosis was rarely, if ever, a topic of discussion that they wanted others to raise with them—participants consistently reported discomfort and frustration at conversations instigated in this way. There needs to be a greater awareness of the fact that, even after receiving a diagnosis, accessing adequate care can still be emotionally and practically difficult and that it can remain difficult to advocate for one's needs. Further, the suggestion by others that someone needs greater care post‐diagnosis can be perceived as invalidating previous experiences. Health professionals also need to be aware of these tensions, and should recognise that their bestowal of diagnosis does not define the processes that their patients are going through as they begin to understand their body and what their health means for their life and identity. A final learning is that, if we as researchers wish to contemplate more fully the experience of living with chronic illness, we too must be willing to move away from diagnosis as a dominant resource for these inquiries.

The authors have nothing to report.

The number of adolescents and young adults living with chronic health conditions is acknowledged to be routinely underreported (Bradford et al.  2015 ; Chapron et al.  2019 ; Joyce and Jeske  2020 ; Sommer et al.  2023 ). Dominant cultural framings of chronic illness and pain are largely centred on later life, and with them come a wide range of normative understandings that profoundly shape people's lived experiences of illness (Wedgwood et al.  2020 ; S. Williams  2000 ). Despite these normative understandings of what should or should not be, many young people do experience chronic ill health, whether within their own bodies, or relationally through friends and family. Yet the ways that early life chronic conditions may disrupt a ‘normal’ life course remain both underacknowledged and understudied. This article focuses on the role of diagnosis—as category and as process (Blaxter  1978 ; Jutel  2011 )—in the lives of young people living with one or more chronic illnesses. Drawing on in‐depth qualitative interviews with 33 young people (aged 19–29 years‐old) living with a range of chronic illnesses, we illustrate how diagnosis can be a highly contested epistemic and emotional space, and find that diagnosis plays a multivalent role in the journey each young person undergoes as they learn to live well with illness.

The authors declare no conflicts of interest.