“It was definitely for a purpose that I was born this way”: Lived experiences of adolescents with chronic illness

Abstract

Teenagers with chronic illnesses gain uniquely increased awareness of the triumphs, challenges, and responsibilities associated with their condition. Although some studies have explored the experiences of adolescents with cancer, few have studied other chronic illness groups. Therefore, the purpose of this phenomenological qualitative study was to explore adolescent perceptions of living and growing with a chronic illness. 12 individuals (ages 13-17) diagnosed with one or more chronic health conditions participated in a semi-structured interview. Interviews were audio-recorded and transcribed verbatim. Using interpretative phenomenological analysis, five themes were generated by the researchers: (1) trajectory of illness over time, (2) illness- and treatment-related restrictions, (3) interpersonal concerns, (4) reaching acceptance, and (5) perceived gains/benefits. Participants identified negative aspects of a chronic illness while also noting positive impacts on their lives. Despite little overlap in diagnoses, similar themes and experiences were present among participants, suggesting some level of generalizability among chronic health conditions.

Keywords

chronic illness adolescence teenagers ambiguous loss psychosocial coping

Introduction

An estimated 15-20% of adolescents in the United States are living with a chronic illness each year, with “chronic” defined as an illness or condition expected to last a minimum of 3 months (Bernell and Howard, 2016; Jin et al., 2017). Many of these chronic conditions, however, will be lifelong. Typically, a chronic illness requires ongoing management over a period of years and can be treated, but not necessarily cured in all cases, with medication and other therapies (Spencer et al., 2023). Thus, those adolescents with chronic illnesses may experience years of symptoms, treatments, lifestyle changes, and adaptations unique to their condition and its trajectory over time.

Adolescents living with chronic illness commonly report encountering a myriad of challenges that can engender stress and emotional responses that impact their everyday lives; these may include feelings of sadness, exhaustion, guilt, hopelessness, and embarrassment (Compas et al., 2012; Sav et al., 2015). Many of these adolescents describe experiencing ambiguous loss - a sense of loss without definitive closure - as they reconcile the reality of their condition with the developmentally appropriate feeling of invincibility and motivation to establish a sense of identity on conjunction with their peers (Weiss et al., 2023; Wickman et al., 2008).

Adolescents with chronic illness frequently name a range of challenges to their social and identity development, threats to their coping skills, and even physical restrictions due to the impacts of the illness itself or medical treatment (Alsaggaf and Coyne, 2023; Compas et al., 2012; Gabay, 2021; Johnson, 2019; Sav et al., 2015). Also, they often remark on a perceived lack of understanding and empathy from their peers, in a time in which it is developmentally appropriate for them to place a high personal value on friendships (Youniss and Haynie, 1992), which can be especially challenging when living with a chronic illness (Ferguson and Walker, 2014; Giletta et al., 2021; Spencer et al., 2023). As a result, some adolescents reconceptualize their illness within the context of their identity. It appears that in the adolescent period, adjusting to a chronic illness generally involves adapting to both the illness and treatment as well as one’s rapidly evolving sense of self and relationships with others (Ambrosio et al., 2015; Gabay, 2021; Lerch and Thrane, 2019). Interestingly, some work has shown that adolescents with chronic illnesses tend to emphasize that their condition does not define their entire personality (Ferguson and Walker, 2014). Furthermore, some have reported that engaging in normative activities contributes significantly to their sense of well-being, but medical setbacks can exacerbate feelings of difference. This may help to explain why some adolescents attempt to conceal their illness so they can blend in with typically developing peers (Kaushansky et al., 2017; Spencer et al., 2023).

One critical aspect of illness management for a number of adolescents is coping with the associated stress of specific situations such as how peers may react to their diagnosis, falling behind in schoolwork, being unable to engage in activities they once enjoyed, and observing the impact of their condition on family and friends (Compas et al., 2012; Coughlin and Sethares, 2017). In response, they may take on more responsibilities and pursue healthcare independence, a process that is typically incremental and involves gradually transferring self-care responsibilities to the adolescent (Heath et al., 2017; Johnson, 2019). Among other skills, a successful transition of healthcare responsibility typically necessitates the development of effective communication and self-advocacy skills, which are essential aspects of navigating the adult healthcare system and landscape (Calabrese et al., 2022). Coping with the expectations and responsibilities of growing up is common among all young people, and although having a chronic illness is likely to complicate this process, it does not appear to fundamentally alter the expected developmental tasks of adolescence.

Although a new diagnosis can be particularly shocking and overwhelming (Batchelor and Duke, 2019), even those who have lived with chronic illness for many years engage in continual readjustments to their illness experience and its impact on social life. As adolescents’ brains develop, they may reinterpret the significance of not being able to take a day off from managing their illness or achieve certain developmental milestones such as moving away from home or driving independently like their peers (Scott et al., 2013; Sobel and Cowan, 2003). However, it is important to note some studies have shown that adolescents can recognize how their chronic illness may contribute to their psychological maturation, perhaps through enhancing socioemotional understanding, deepening insight, and fostering resilience (Ferguson and Walker, 2014; Kristjansdottir et al., 2018). In order to obtain these positive effects, social support and normalization are almost universally essential in helping them maintain a sense of perspective despite the challenges related to their health status, social relationships, and schooling (Alsaggaf and Coyne, 2023; Berntsson et al., 2007).

While a vast amount and array of experiences and symptoms exist across different chronic illness diagnoses and treatment plans, previous research has largely been disease-specific (Kish et al., 2018; Sawyer et al., 2007). Though helpful in their narrowed scope to some degree, the work to date has eliminated the opportunity for exploring and generalizing experiences of adolescents with chronic conditions, which is particularly crucial for rare diseases and less-researched communities. Additionally, in a time in which adolescents are developing a sense of identity and seeking acceptance from their peers, this limited scope has hidden the spectrum of what chronic illness can be and unintentionally silenced the experiences of a vulnerable population. Therefore, the purpose of this study was to explore the lived experiences of adolescents with chronic illnesses other than cancer.

Methods

Study design

A psychological phenomenological approach was used to explore participant and experiences and perceptions while attending to both within- and across-participant similarities and differences. This design was chosen for its participant-centered approach and flexibility, allowing for a focus on adolescents’ lived experiences in context while also capturing detailed descriptions of psychological processing.

Participants

A total of 12 adolescents with chronic illnesses took part in the study (see Table 1 below). The sample size was determined in line with Hennink and Kaiser’s (2022) recommendations for qualitative research. Adolescents between 13 and 17 years old who were proficient in English and had been diagnosed with a chronic illness were eligible to participate. Those adolescents who were actively receiving hospice care, were currently in state custody, had an intellectual or developmental disability, or had a current or past diagnosis of cancer were excluded from participation. All individuals had been living with their illness for a minimum of 6 months at the time of participation. Nine identified as white or Caucasian, two identified as two or more races, and one had a Hispanic or Latino ethnicity.

Table 1.

Participants.

Pseudonym	Age	Gender	Condition(s)	Age at diagnosis^a
Dominic	13	Male	Unspecified anxiety disorder	Young adolescence
Matthias	14	Male	Scoliosis	Adolescence
Hayden	14	Female	Type 1 diabetes, celiac disease, gastroparesis	Early childhood
Riley	14	Female	Pectus excavatum, scoliosis	Infancy
Caden	15	Male	Chronic recurrent multifocal osteomyelitis	Adolescence
Jenna	15	Female	Ulcerative colitis	Adolescence
Kirsten	16	Female	Type 1 diabetes	Young adolescence
Philip	16	Male	Benign brain tumor, seizure disorder	Adolescence
Lucas	16	Male	Ulcerative colitis	Young adolescence
Hector	17	Male	Chronic depression, generalized anxiety disorder	Adolescence
Elliot	17	Male	Enlarged vestibular aqueducts (with hearing loss and balance issues)	Infancy
Emilia	17	Female	Cystic fibrosis	Infancy

^aFor participants with multiple health conditions, this indicates the earliest age a chronic condition was diagnosed.

Participants were recruited in two ways, first via the online recruitment platform ResearchMatch, and second through in-person discussions at a local children’s hospital within an academic medical center in the southeastern United States. Medical center patients were identified in conjunction with the child life specialist staff working at the site, who gave brief verbal information about the study and then referred to the study team for more information and consent. In total, study information was distributed to approximately 250 patients at the medical center, and approximately 1100 via ResearchMatch. Of these, 46 initially expressed interest in an interview, but did not respond to invitations for scheduling. Another seven expressed interest but were screened out after sharing with a research assistant that they did not meet eligibility criteria. No participants withdrew after beginning the interview.

Procedures

Prior to beginning data collection, full Institutional Review Board approval was granted by the children’s hospital research site under protocol number 231071. Once an adolescent or parent heard about the study and expressed interest in either setting, a member of the research team met with the dyad to first obtain consent from the parent, and then assent via a written assent form with the adolescent. Participants were then given the option of a phone or Zoom interview conducted by a member of the research team, scheduled at their convenience.

All data were collected between January and June 2024. Interview sessions lasted an average of 21 minutes and were conducted privately between a research assistant and the participant, as it was felt parental presence might result in significant observer effect. Notably, no participants or parents requested the converse. Phone interviews were audio recorded and Zoom interviews were audio and video recorded for transcription.

Completed interviews were transcribed verbatim and analyzed using a line-by-line, inductive coding approach as per Boles et al. (2017), drawn from Moustakas’ (1994) psychological phenomenological tradition and the interpretive phenomenological analysis framework put forth by Willig (2008) (see Table 2 below). Two research assistants independently coded each interview transcript, identifying pertinent codes or “meaning units” in a line-by-line fashion. To crystallize the data while also guarding against data loss, both sets of codes for each transcript were then transferred into a comprehensive code list. Codes that were repetitious or similar in meaning were combined into larger categories, and transcripts were re-reviewed to ensure completeness of the category list. The research assistants then worked in consensus meetings to identify relationships between the categories as evidenced in the transcripts, simultaneously combining categories into the resultant themes and subthemes presented here. Transcripts were then reread to ensure identified themes were as grounded in the data as possible.

Table 2.

Analytic process.

Step 1	Each transcript is independently coded by two members of the research team. Coding is inductive (without a predetermined codebook) and occurs line-by-line
Step 2	Both sets of codes for each transcript are transferred into a comprehensive code list. Transcripts are reviewed to ensure completeness of code list
Step 3	Repetitive and overlapping codes are combined into larger categories
Step 4	Transcripts are reviewed to ensure completeness of categories
Step 5	In group consensus meetings, the developed categories are reviewed alongside transcripts to identify relationships between categories
Step 6	Related categories are combined into overarching themes and subthemes
Step 7	Transcripts are reviewed to ensure accuracy of themes and identify thematic examples for presentation in the results narrative

Results

Five overarching themes and 11 subthemes were identified: (1) illness trajectory, (2) impacts of illness, (3) interpersonal concerns, (4) acceptance, and (5) positive outcomes (see Figure 1).

Figure 1.

Themes and subthemes.

Theme 1: Illness trajectory

Participants frequently described recognizing how their illness experience changed between the initial diagnosis and present day. Many reported that they enjoyed reflecting on this pivotal moment in their lives when they first received a diagnosis, and piecing together the many significant differences they experienced as they exchanged childhood for adolescence.

Subtheme 1: Diagnosis

Many participants reported feeling overwhelmed during their diagnosis period, with some even saying it was a “traumatic” experience for themselves and their families. For instance, when discussing the seizure that led to his diagnosis, one participant said, “I don’t even remember it. It’s like I wasn’t there. And everyone around me remembers it and is traumatized, but all I remember is just waking up in the back of an ambulance… And now I have to reorganize my life off of something that I don’t remember at all” (Philip). On the other hand, those participants that were diagnosed with their chronic illnesses as infants or young children reported no memory of an adjustment period, as their diagnosis was a part of life that they had always known. As one participant shared, “I was diagnosed on the younger end of the spectrum with both diabetes and celiac so it’s kind of, as I grew up, the only thing I knew. I never had to really adapt to [not] eating gluten, or to start giving myself insulin injections; it’s something I’ve always done” (Hayden).

Some participants recalled how the diagnostic process was straightforward and linear. On the other hand, others reported seeing many specialists, hearing many different medical opinions, and ruling out many different conditions before finally receiving a final diagnosis. As Caden relayed, “They said it was either this condition [chronic recurrent multifocal osteomyelitis] or it was a benign tumor. I would have rather had the tumor, and they just take it out.”

Subtheme 2: Changes over time

Rather than understanding their experience with chronic illness as static and unchanging, participants actively share perceptions of their illness experience as dynamic over time. As Matthias simply stated, his illness is “definitely a journey, and it has changed me.” Some participants reported an observation that they have become more open to talking about their chronic illness now as compared to when they were younger or first diagnosed. Matthias continued, stating, At the beginning I just thought I was weird but I was like, ‘Oh, OK, so there’s other people who don’t think it’s weird or whatever, they think it’s cool.’ So, I slowly started to be more open about it.” Additionally, some participants discussed that over time, rather than allowing their parents to do all the talking for them, they began advocating for themselves more directly.

When I was younger I think Mom did all the talking, and I never had to be the one to tell someone, but now that I’m an adult, I try to do more speaking for myself and when people ask about the illness, I try to educate them. When I was little, it didn’t really matter to me if people knew, and Mom would do a lot of talking for me. But now I try to be careful who I talk to about it (Emilia).

Though chronic illness diagnosis was a memorable time for those participants who were old enough to be aware of it, regardless of age at diagnosis, all participants recognized how their experiences – and in response, their abilities or needs – changed over time.

Theme 2: Impacts of illness

When reflecting on their chronic illness experience, participants identified three primary impacts of chronic on their lives: activity restrictions, increased attention to self-care, and feelings of uncertainty. These impacts were seen to stem both from the illness itself and from treatments or procedures used to manage it.

Subtheme 1: Activity restrictions

Most participants reported an awareness of the activity restrictions related to their chronic illness. A female living with cystic fibrosis, for instance, shared the perception that her illness held her back from doing “normal things”:

I can’t enlist in the armed forces. I can’t donate blood... [If I didn’t have cystic fibrosis] I’d have more time to do other things because I wouldn’t have to dedicate so much time to treatments. It’d be easier to travel. It would make a lot of things easier. And my life would be more like my friends’ lives, where they can just do normal things (Emilia).

Many other participants also discussed mobility limitations and thus felt restricted in their ability to play sports, participate in house chores, and sleep in certain positions. One explained that if not for the illness, “I could sit down for longer periods, [or] do a lot more exercise without having to worry about overworking my shoulder or back to the point where I can’t walk” (Caden).

Even when physical abilities were not deeply impacted, several participants shared how their diagnosis served to limit their freedom and independence. Medical and safety concerns prevented some participants from staying home alone, sleeping over at a friend’s house, or being near a body of water. One participant noted, “Well, lack of independence is like… My parents don’t really want me home alone anymore. Which is annoying cause that means I always gotta be with someone. I really don’t wanna rely on people like that” (Philip).

Subtheme 2: Self-management

Teens in this study also identified being hyperaware of the need to take care of themselves. Many participants discussed the measures they take to keep their bodies healthy, with some examples including paying attention to the foods they consume, balancing the need for sleep with the typical schedule of a high school student, and taking their medication. As Kirsten shared:

It helps keep me in check with the things I’m doing and keeping myself healthy... Just being aware of what I’m eating and being aware of my emotions along with my blood sugar levels and everything…[I’m] putting in the work now so that later when I’m older, I’m not going to have all these side effects, and I want to feel better for myself and for my future self.

Participants also specifically described techniques they use to take care of themselves while in the school setting, namely through accommodations provided by the school. Additionally, some participants shared that they had IEPs or 504 Plans (school accommodations provided to support students with disabilities). One participant shared her experience with her 504 Plan, saying, “[It] was honestly so amazing because it means that I’m allowed to go to the bathroom whenever I want to… Oh, and then also with the 504 Plan I’m allowed to just hand my assignments in late and take more time on tests” (Jenna).

Subtheme 3: Uncertainty

Almost all participants articulated feelings of uncertainty when it came to their life with a chronic illness. Two different root causes of uncertainty were discussed: one, the uncertainty of the illness itself, and two, uncertainty about what the future will look like with their chronic illness. For the first cause of uncertainty, the participants discussed the experience of waiting for their next illness flare-up or episode, especially when knowing it would potentially be more painful or difficult than prior instances:

You don’t really know when it’s gonna flare. There are some factors, but you never really know. It could just pop up, and it does kind of gradually worsen, but it feels just random. And then they could be either really, really painful to the point where I can’t walk, or just a slight inconvenience, which is even more scary, cause I don’t know what the next one’s gonna be like (Caden).

Additionally, the uncertainty of waiting for test results was identified as a stressor, with Emilia stating, “[T]he clinic has become like a stressor for me because of all the uncertainty of the tests where I’ve had really bad test results before… I always worry about how that’s gonna turn out.”

Many participants proceeded to discuss uncertainty about the future, expressing concerns regarding college (“College-wise, I’d probably need to stay somewhat close, for follow-up appointments and stuff” [Philip]), romantic relationships (“[T]he person you’re dating…they have to know that you come with a lot of different conditions that need to be taken care of” [Emilia]), and careers (“I want to be a cargo pilot…but there are some conditions that you need to clear, to be legally able to fly. So, if I don’t meet those specifications, qualifications, or whatever I can’t legally fly for anyone. I mean, that’s kind of my dream to do that” [Caden]). No matter the source or timing of the uncertainty participants experienced, most described uncertainty as a distressing component of living with chronic illness.

Theme 3: Interpersonal concerns

A variety of interpersonal concerns were identified, both when interacting with peers that have the same chronic illness and those that do not. Participants discussed the process of disclosing their chronic illness to others; they talked through the process of determining who and when to tell, as well as the initial and ongoing reactions of others to this new information.

Subtheme 1: Decision to disclose

Most teens reported only discussing their chronic illnesses with others if it came up in conversation. One participant said, “If I can’t do something one day, and someone’s like, ‘Oh, what’s going on with you today?’ ...I’ll tell them…But again, I don’t make it my whole personality; I don’t need everyone to know. Just if it happens to come up, then it comes up” (Caden). Two primary motivations for disclosure were identified by participants: disclosure as a show of trust, and disclosure by means of necessity.

Most participants discussed that their decision to disclose their chronic illness to a friend was largely dependent on the feelings of trust between them.

At first—especially when I started getting sick more—I thought, ‘What are my friends gonna think of this?’ Or ‘I should probably tell my friends, but I don't really want to.’ It got easier when I knew I could trust those people with the information as I got to know them (Emilia).

On the other hand, when teens disclosed their chronic illness to others by means of necessity, it was often to coaches, teachers, and bosses – people in positions of perceived power. When one participant discussed needing to disclose her illness to her coaches, she said, “My coaches are all aware and they know what to do in an emergency and are pretty chill about it” (Hayden). In another situation, a teen explained telling his friends because “I swim with them, so I have to take my shirt off, so they were going to see my ostomy belt” (Lucas). Overall, most teens agreed that who they choose to disclose their illness to “depends on the person” (Emilia), and that they rarely shared their diagnosis early on in a developing friendship or relationship.

Subtheme 2: Actual vs. Ideal reactions

Participants reported receiving “a mix of reactions” (Emilia), both positive and negative, when disclosing their chronic illness. Understanding and compassionate responses were appreciated by many participants, with one recounting, “My close friends kind of reassured me that having it didn’t make me any less of a person and it didn’t separate me from anyone else” (Kirsten). When recounting some of the negative reactions they received, some identified unsolicited advice as a negative reaction. As Hayden shared, “[P]eople who are in an older generation…they’ll be like, ‘Well, why don’t you try keto?’ Like they try to push their maybe preconceived ideas onto me about it. And I’m like, ‘No, I live with it, like that’s not really gonna work.’”

Others reported how others’ reactions left them feeling self-conscious and “weird”:

It has hurt when people have treated me like I'm weird and that's why I don't always tell people right away, because I don’t wanna get that kind of reaction. It's important for them to know I'm a person like them. I just deal with this chronic illness. I guess that makes me a little different but I'm still a human being and they don't need to think I'm weird (Emilia).

Most participants described their ideal reaction when disclosing as being “chill” (Philip) or “whatever” (Caden) about it. One participant stated, “If people had a big reaction [when I told them about my condition] I possibly would not feel comfortable sharing it” (Hector).

Subtheme 3: Navigating shared waters

For some participants, integrating themselves into the illness community was important (“I don’t like having diabetes, but I really like being part of the community because everybody is just awesome” [Hayden]), while for others it did not feel important to meet people with the same condition. Some teens shared that they knew others in school, camp, online, or within their family circles that had the same illness or condition. For instance, when discussing her experience at a camp for people with ulcerative colitis or Crohn’s, Jenna said, “It was just really nice to see that there were other people that were also going through it, and like you know, the world didn’t end, it wasn’t all horrible.” Apart from those who felt indifferent about accessing the illness community, some participants who desired this connection but were unable to access it reported feeling isolated.

Subtheme 4: Impact of others’ perceptions

Teens reported that the ongoing perceptions of others plays a part in how they feel about themselves and their chronic illness. Participants with a more visible illness shared that they were more self-conscious and anxious about their condition:

I was like, ‘What if I walk weird? What if I’m bent over and I couldn’t tell at all?’...I’m definitely very open with people... Like, ‘The reason I sit so straight and good is because I had back surgery’… because I don’t want people to just think that I sit so straight—like an English queen from the 1600s—just cause I can (Matthias).

Visible symptoms also lead to self-imposed activity restrictions for some. One participant shared, “Before my bladder surgery, I peed in the bed a lot. Like, almost every night…I was so embarrassed when that happened. I didn’t really want to have as many sleepovers with anybody because I feel like I would just pee the bed and embarrass myself” (Riley).

Several participants also reported feeling more comfortable with the visibility of their illness when they received support from their friends.

After I told all of my friends, they were super supportive, so now whenever I'm about to have a colonoscopy I invite them over for a prep party. We watch something while I drink all the Gatorade and everything...It honestly makes me feel less alone and I’m almost, I don’t know if I'd say almost but like the tiniest bit looking forward to the next one (Jenna).

Conversely, they shared feelings of being misunderstood by others sometimes. Hector shared that, “[W]hen I bring [my condition] up with my mom, basically all she tells me is that I’m complaining for no reason and that I don’t have the right to complain.” Another said, “It kind of creates a mental block around other people because they just don’t get it, and even if you try to explain it they still won’t. Even my mom and dad who have been with me every step for the past 12 years with diabetes, sometimes they still don’t get it” (Hayden). It appears then that others’ perceptions of one’s illness and abilities were of significant concern to the participants in this study.

Theme 4: Acceptance

Participants frequently discussed the process of accepting their chronic illness, which could be a long road in some cases. In response, they described a variety of coping tactics to manage their illness. For many, humor stood out as a powerful coping tool.

Subtheme 1: Coming to terms

While many teens reported a sense of acceptance of their chronic illnesses, the process of “coming to terms with it” (Kirsten and Caden) was described differently by each of the participants. Some participants discussed immediately accepting their illness (“It didn’t take me too long after the first few flares I was kind of just like alright, this is life now” [Caden]). On the other hand, some took longer to reach a point of acceptance:

The first year or so, I think I was just more overwhelmed with it and I didn’t want the extra stress of what people thought of me on top of it. ...Now I’m a lot more open with it and I’ve kind of come to terms with, like, this is what I’m going to be living with and I might as well make the best of it (Kirsten).

Regardless of the time frame, acceptance appeared to be both a goal and a process for participants living with chronic illness.

Subtheme 2: Humor as coping

Many teens shared that they used humor to cope with the illness itself, and to help manage feelings when disclosing their illnesses to others:

I wish people would joke about it more instead of this serious stuff, because I dislike serious situations with my whole heart. I love laughing, I love being the life of the party… And sometimes it's like, ‘Ohh, so you're like crippled?’ And I usually laugh at that because I think it's funny (Matthias).

Some participants mentioned using humor as the method of disclosing their illness to others. “Most times when I bring up that I’m deaf it usually comes up as a joke. If I’m on a voice chat or whatever like on Xbox or Discord, my friends—if somebody’s arguing about video games—say, ‘What are you, deaf?’ and I say, ‘Yes’...they laugh, and I go, ‘No, seriously’” (Elliot). Humor appeared to be both a supportive coping mechanism, and also a way to smooth potentially challenging peer interactions.

Theme 5: Positive outcomes

When asked to reflect on any perceived positive impacts related to their chronic illness, some participants listed ideas willingly and readily, while others appeared initially stumped. In all cases, interviewees felt having a chronic illness was not ideal. Several participants could identify both positive and negative aspects to living with their diagnosis or diagnoses. Other participants, when asked outright whether there were any positive aspects, asserted that there were none; however, in the course of the interview, they went on to report positive aspects.

Some teens felt that their chronic illness made them more resilient and adaptable, as well as more empathetic towards others experiencing challenges or adversity. As Emilia shared, “I think it was definitely for a purpose that I was born this way. Even though I wouldn’t have wanted it, it has helped me to help other people.” Several participants also expressed that their chronic illness experiences served as “icebreakers,” per se, and led to increased ability to form social connections with others. As Matthias reported, “I guess one good thing…is it gives me a good story to do icebreakers with. Yeah, so that’s definitely one of the cool things. I could be like, ‘Hey guys, I had a seven-hour surgery, so how are y’all?’”

Discussion

Participants in this study described their experiences as adolescents with chronic illness through five themes: illness trajectory, impacts of illness and treatment, social impacts, acceptance, and positive outcomes. Taken together, these themes align with previous work suggesting adolescents with chronic illness take on increased responsibility for managing their condition as they approach adulthood (Heath et al., 2017; Johnson, 2019), while also reconceptualizing their illness in the context of their identity (Ambrosio et al., 2015; Gabay, 2021; Lerch and Thrane, 2019). Participants in this study additionally detailed various ways they care for themselves independently, from handling medications and treatments to meal planning and even reducing physical activity when needed. In addition to treating their physical and mental health needs, participants in this study described increased ability and willingness to self-advocate for their condition in a social context. This communication becomes a critical skill as they transition not only to adult healthcare, but also new social environments such as college or the workplace (Calabrese et al., 2022).

Previous research has highlighted the feelings of shock and overwhelm that often accompany a new chronic illness diagnosis (Batchelor and Duke, 2019), and this was clearly echoed by participants in this study who were able to remember the time of diagnosis. While those diagnosed in infancy or early childhood could not recall life without the condition, all participants discussed new dimensions arising from their current developmental stage, such as starting high school or entering the workforce. As Scott and colleagues (2013) have suggested, these findings align with the hypothesis that adolescents are better able to conceptualize the trajectory and restrictions imposed by their health conditions, compared to younger children. Limitations and uncertainty were recurring themes in this study, indicating adolescents - like adults – may grasp the reality of a long-lasting or incurable condition that is likely to flare up or progress in the future (Scott et al., 2013; Sobel and Cowan, 2003). While they did not enjoy having these limitations (Sav et al., 2015), they did not describe engaging in avoidance, maladaptive, behaviors or unrealistic hopes.

Interpersonal relationships encompassed a large proportion of participants’ responses. This is understandable, as it is known that socialization with peers becomes increasingly important during the teenage years (Youniss and Haynie, 1992) as adolescents frequently desire to blend in with the crowd rather than stand out or appear different (Ferguson and Walker, 2014; Giletta et al., 2021). Participants often reported they would only disclose their condition to people they trusted, and found minimal, neutral reactions to disclosure to be ideal. These findings echo existing research suggesting many teenagers attempt to hide or conceal their condition around people they do not know well (Kaushansky et al., 2017; Spencer et al., 2023). Visibility of the illness or treatment was a common concern for adolescents in this study and was directly related to the decision to disclose. They desired the condition to be seen as a part of them, but not their whole personality, like findings by Ferguson and Walker (2014).

Participants in this study noted themes of acceptance, humor, and gains related to their condition. Coping resources and normalization have previously been noted by adolescents with chronic illness as important to their well-being (Alsaggaf and Coyne, 2023; Berntsson et al., 2007). Though many negatives were associated with a chronic diagnosis, there are also correlations with increased sympathy, resilience, insight, and empathy (Ferguson and Walker, 2014; Kristjansdottir et al., 2018), which were echoed by participants in this study. Awareness of these benefits may contribute towards patients, families, and clinicians having a more holistic view of the lives of adolescents with chronic illness.

Medically, participants in this study had a wide range of diagnoses with very little overlap across participants. Despite this variability, their interviews revealed many commonalities in thoughts, feelings, and perceptions related to their illness. Although previous literature has touched on similarities such as these (Ferguson and Walker, 2014), few studies have explored these shared experiences, with most researchers opting to focus on a specific diagnosis such as asthma or diabetes (Kish et al., 2018; Sawyer et al., 2007). These findings suggest a need for continued research to improve understanding of generalizability and differences across types of chronic illness. This may be especially beneficial for advancing knowledge in rare disease communities.

Limitations

As a phenomenological qualitative study, this research prioritized depth of participant responses over the breadth of a large quantitative study, and, like any research, the study was not without limitations. First, semi-structured interviews were largely conducted virtually due to geographic distribution of the participants; this may have also limited the rapport that could be generated with adolescent participants and thus may have affected their engagement and responses. Additionally, only English-speaking participants were recruited for this study, thus results cannot be assumed to also apply to other cultural linguistic groups – especially when language in itself can limit healthcare access and experience. Finally, all experiences in this research were self-reported (as is the case in phenomenological work), thus more research is needed to examine the measurable impacts and outcomes of adolescent chronic illness.

Further research is needed to determine differences across individuals with varying health conditions, as well as the impact of age at diagnosis. The experiences of adolescents from minority racial or ethnic backgrounds also merits more in-depth research in a future study to ensure all positionalities are adequately represented.

Conclusion

Adolescents living with chronic health conditions face challenges and limitations not experienced by their healthy peers, but also identify positive inter- and intrapersonal gains that they attribute to their illness. During this critical period of socioemotional development, adolescents’ outlook on their health and future takes on new dimensions, which may be predictive of later health experiences and health-seeking behaviors. While participants in this study reported concern about how the disease would affect their interpersonal relationships, many experienced high levels of social support, and had developed valuable coping skills that helped them reach a place of acceptance and identify positive aspects of their lived experience.

Footnotes

ORCID iD

Briana P Keller

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Portions of this study were funded by an internal RAMP grant through Vanderbilt University Peabody College.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The datasets generated and analyzed during the current study are not publicly available due to risk of breach of confidentiality, but are available from the corresponding author on reasonable request.*

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