Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France.

Abstract

Using the biographical disruption literature, this article examines how the experience of illness - in this case, pemphigus - reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low-risk physical activities; engagement in medicalised normalisation; and salutary engagement.