Gender and care in the context of rare diseases: exploring nuances of emotional support and the division of household labor

ABSTRACT

This article explores the ways in which having a rare skin disease (pemphigus) can reveal and redefine individuals’ interpersonal relationships and how they experience and use the support of loved ones. It examines two aspects of “care”: emotional support and practical support (through the division of household labor). It takes a relational ontological approach that is especially attentive to the biographical repercussions of care, and its gendered dimensions in particular. Our analysis is mainly based on interviews with 25 individuals in France (13 women and 12 men) with pemphigus, a rare disease that affects the skin and mucus membranes that can be controlled through long-term medical treatment. Its burn-like lesions often take the form of blisters, making pemphigus a bullous disease. Use of the concepts of “caring for” and “caring about” prove heuristic in studying care relations, especially when taking a gendered perspective and probing underlying tensions. The distinction between caring “for” and “about” is also relevant to comprehending biographical disruption, which mainly results from a lack of emotional support when the negotiation of practical support has made it possible to normalize everyday life.

KEYWORDS:

• Gender
• care
• rare disease
• emotional support
• household labor

Acknowledgements

The authors also wish to thank the participants, the French association of patients (Association Pemphigus Pemphigoïde France) and the departments of dermatology of Avicenne, Bordeaux, Clermont-Ferrand, Le Mans, Lille, Marseille, Quimper and Reims. Finally, the authors are grateful to Pascal Joly (centre de références sur les maladies Bulleuses auto-immune, Rouen) who supervise a broader research on the vulnerability of people living with pemphigus. We would also like to thank the anonymous reviewers and editors for their helpful insights.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research was supported by a grant from Societe Francaise de Dermatologie et de Pathologie Sexuellement Transmissible and Institut de Recherche Interdisciplinaire Homme et Société.