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