Pumping iron: compliance with chelation therapy among young people who have thalassaemia major

Abstract

Compliance with medical regimens is not simply a technical or practical task but part of the everyday experience of living with a chronic illness. Any discussion of compliance must, therefore, begin from the individual’s personal and social context. This paper explores how young people who have thalassaemia major respond to their daily chelation therapy. It suggests that compliance dominates the young person’s narratives and represents the most disruptive aspect of their illness. More specifically, compliance evokes both practical and emotional difficulties as the young person tries to make sense of the relationship between body, self and illness. Within this dynamic process the young person has to reconcile the consequences of non-compliance within the broader experience and responsibilities of ‘growing-up’ and maintaining a positive self-identity.