INTRODUCTION: An increasing number of grown-ups survive treatment for congenital heart disease due to improved prognostics for this group over the last decades. However, a smaller group of patients cannot be fully cured and encounter problems that require lifelong medical follow-up. This study examines how grown-ups with congenital heart disease (GUCH) understand their illness and body and describes the social and familial implications of the disease.

MATERIALS AND METHODS: The study is based on participant observation in the GUCH patient organization, Hjerteungdom, and 11 semi-structured interviews with informants--all born with a severe congenital heart disease e.g. single ventricle, Steno Fallot, and transposition.

RESULTS: The informants try to compensate for the lack of physical performance by adapting to alternative rolls during physical activity and pursuing academic interests in order to obtain social recognition. The informants wish to define themselves as competent and normal young adults in public life in order to avoid being treated as ill. At the same time the informants need to discuss health concerns openly, which they have traditionally done with their parents as they know their entire medical history.

CONCLUSION: The informants experience limitations in their physical and social activities, but they try to adjust to living with a chronic disease and in this way they experience that the condition is controlled and mastered. GUCH patients can benefit from including personal and family issues in medical counselling because it can help them to cope with the disease in everyday life.