Rouen Normandy University, Mont-Saint-Aignan, France.
Rennes University, Rennes, France.
Sociol Health Illn. 2020 Jan;42(1):65-79. doi: 10.1111/1467-9566.12987. Epub 2019 Sep 9.
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.
本文运用传记中断理论，探讨了疾病体验（此处为天疱疮）如何重新配置人们参与休闲活动的方式，以及这些活动如何融入患有罕见慢性疾病的个体的生活轨迹。在疾病带来的诸多变化中，休闲活动尤其具有启发性，因为它们主要依赖于身体。本研究基于对 50 名天疱疮患者的访谈，天疱疮是一种罕见的慢性皮肤病。他们与休闲活动的关系为传记中断提供了新的视角。第一个引人注目的观察结果是它们的多样性：疾病并没有消除社会差异或生活经历，甚至可以进一步巩固对各种活动的投入。我们确定了四种类型的休闲活动参与方式：脱离，表明传记中断；适应性参与，引导个体从事低风险的身体活动；医疗正常化参与；以及有益的参与。
