Taking care of oneself and others: The emotion work of women suffering from a rare skin disease

Abstract

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57. We show that serious and chronic illness does not radically alter the feeling rules in place with close friends and family, despite the uncertainty and emotional upheaval confronting patients. The emotion work they carry out should be understood in light of roles and places established prior to the onset of the disease. Emotion work is embedded in the broader history of relationships with family and friends and prior episodes of illness help create particular configurations and expectations.