Living with a Chronic Illness in Adolescence and Emerging Adulthood

Abstract

This study explored the lived experiences of chronic illness during adolescence and emerging adulthood. Previous research has indicated that chronic illness can result in disruptions to people’s lives because of the related physical challenges and social stigmas. These challenges may be particularly salient in adolescence and emerging adulthood because of pressure to “fit in” with peers, cultural associations between youth and health, and limited experience adjusting to difficult life events. However, little is known about the impact of having a chronic illness on the lives of young people. This study addresses the over-arching question: how and when can chronic illness become a problem for young people in their everyday lives (i.e., leisure, relationships, school and work) and what types of adjustments are made as a result? The final sample of participants in this study consisted of 29 young people (23 women, 6 men) each of whom was living with a chronic illness. Unstructured in-depth interviews were conducted with 26 participants, as well as 3 semi-structured electronic interviews. Data were analyzed using a grounded theory approach. The findings suggested that the main challenge for young people with illness is achieving a desired identity. Being able to achieve a desired identity was tied to three processes. These processes included participants’ ability to manage their appearances and reputations, accomplish desired activities, and experience positive relationships. Although most adolescents and emerging adults to some degree face these same challenges in attempting to achieve desired identities, experiences associated with chronic illness can intensify these challenges. Further, the factors that contribute to them being challenging seem to be unique to those living with a chronic illness. The findings also suggested that participants’ experienced chronic illness in varied ways. Many of the adjustments and factors that contributed to these differences, including how people’s experiences changed over time are identified. These adjustments and factors are similar to the coping strategies and constraint negotiation strategies identified in previous research at a generic level. The specific ways in which young people with chronic illness are able to achieve identity is also described, including differences within the experiences of participants.