“I'm not what I used to be”: A qualitative study exploring how young people experience being diagnosed with a chronic illness

Abstract

Background: Childhood long-term conditions are usually diagnosed in infancy or early childhood. Little is known about the particular experiences and needs of young people who receive a chronic illness diagnosis during adolescence or late childhood. This paper will examine this experience in relation to multiple sclerosis (MS), which is increasingly being diagnosed before adulthood.Aims: To explore how young people experience an MS diagnosis.Methods: Qualitative study using a grounded theory approach. In-depth interviews were conducted with 21 young people diagnosed with MS. Participants were recruited through health service and voluntary sector organizations in the United Kingdom.Results: Young people's pre-illness normality was disrupted by the diagnosis of a chronic illness (MS). Participants experienced their body as changed physically, cognitively, and emotionally and as changeable due to symptom unpredictability. This influenced how participants perceived and presented their identity, disrupted their relationships, and altered their future biography. Young people developed strategies to manage their condition and identities in order to incorporate MS into their current and future lives, which required continual illness and identity work in response to changing symptoms, social contexts, and relationships.Conclusions: Although young peoples' experience of living with chronic illness has been widely explored, the aftermath of diagnosis has been underresearched from their perspective. This study contributes to this knowledge gap by illuminating how young people experience a chronic illness diagnosis and negotiate the resulting changes to their identity, relationships, and future. The findings suggest that young people need preparation and support in disclosing their diagnosis to others. Professionals supporting young people with long-term conditions need to work closely with specialist mental health services to ensure that they receive appropriate emotional support. Schools have an important role in ensuring young people with long-term conditions achieve their academic potential and receive appropriate careers advice.

Project YES! Youth Engaging for Success: A randomized controlled trial assessing the impact of a clinic-based peer mentoring program on viral suppression, adherence and internalized stigma among HIV-positive youth (15-24 years) in Ndola, Zambia

“…growing body of literature on the relationship between internalized stigma, identity, developmental stage and chronic illness outcomes among AYA [48][49][50]. Another key finding was the relative increase of 4.7 in VS among AYA intervention versus comparison participants in the pediatric clinic at the children's hospital.…”

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

“…Others talked of concerns that their friends might feel stigmatised because of their connection with them (associative stigma) [19]. Anticipated stigma became enacted stigma for some young people when established friendships or friendship networks were damaged or lost by disclosure, as seen elsewhere [14]. Unexpected responses included friends worrying if the condition was catching; contagion is also associated with stigma (associative stigma).…”

“…Unlike some chronic conditions, to a greater or lesser extent, IBD lacks "surface descriptions" [12]; for the most part, it is hidden from or invisible to others [13], which enables concealment of the condition. People with a hidden condition may decide to conceal it from friends and family and from key stakeholders in their lives such as teachers and employers as a means of identity management [14]. Such concealment helps sustain a sense of self as a "normal" person [15] and avoids negative biographical disruptions [14,16] such as the stigma and tarnished identity of being known by the bodily disruptions and eruptions of IBD [13].…”

“…People with a hidden condition may decide to conceal it from friends and family and from key stakeholders in their lives such as teachers and employers as a means of identity management [14]. Such concealment helps sustain a sense of self as a "normal" person [15] and avoids negative biographical disruptions [14,16] such as the stigma and tarnished identity of being known by the bodily disruptions and eruptions of IBD [13]. Young people have to manage those challenges to their identity as they become "emerging adults" [17], a key turning point in their development of self-identity [18].…”

“…Disclosure is not a single event [23]: it is a dynamic, selective, complex, context-dependent, and nonlinear progressive journey drawing on multiple strategies [15,24]; the extent of disclosure can range from partial to full(er) [25]. Who and what a person decides to share about their condition is related to their adjustment to their diagnosis and altered identity [14] and their experiences in different situations such as school, university, or work [26] and their transitions during their life course [13,24,27].…”