A NORMAL LIFE WITH AN UNHEALTHY BODY: SELF-IDENTITY IN ADOLESCENTS GROWING UP WITH CHRONIC ILLNESS

Abstract

INTRODUCTION: Chronic illness is often described in terms of biographic disruption. However, for those growing up with congenital disorders, an unhealthy body is the norm. An important developmental task in adolescence is the formation of self-identity. How does a chronic disorder influence the development of self-identity in adolescents? OBJECTIVE: Our aim was to investigate attitudes and preferences of adolescents living with chronic disorders. METHODS: A qualitative study was conducted by using semistructured interviews that focused on daily life issues. The sample consisted of 31 adolescents (aged 12–19 years) with various chronic disorders who were randomly selected from the patient database of Erasmus Medical Center-Agia Sophia Children's Hospital. Data analysis was performed by using a qualitative analysis computer program (ATLAS.ti, Berlin, Germany). RESULTS: For most adolescents with chronic disorders, living with illness is “normal.” By comparing themselves with healthy peers, they recurrently stress their own normality. They strongly agreed with the statement, “I am like everyone else, my illness is something extra.” Therefore, disclosure of health problems remains a sensitive issue, and contact with fellow patients is not often sought. Most held optimistic views about their futures, and only a minority told problematic accounts of the acceptance of their dysfunctional bodies. CONCLUSIONS: Normalization of an unhealthy childhood seems to be an important strategy in identity-forming in adolescents. It may be interpreted as denial, but adolescents consider denial to be “dangerous” and “stupid.” We view normalization as a strategy to accept reality while preventing illness to dominate their life: “I try not to think about it, not because it scares me, but because it's there.”