The Intersectional Patient Work of Living with Hidradentitis Supprativa (HS)

• In Event: Sociology of the Body and Embodiment Section Open Call Paper Session

Abstract

Hidradentitis Supprativa (HS) is a chronic, progressive auto-inflammatory skin condition that causes painful, malodorous lesions that lead to scarring, sinus tract formation, and functional disability during flares. The study team interviewed 50 people living with HS and 12 medical providers who specialize in treating HS. For this article, I also utilized autoethnographic data, ethnographic field notes from conferences and support groups, and publicly available information from HS advocacy websites to describe the social world of HS treatment and advocacy over the last five years. I draw on medical sociology literature on the work of patients (Strauss et al. 1982) to describe how HS patients work to make HS visible to medical providers, but invisible to the outside world. I argue that the patient work of making HS visible is shaped by social class via access to healthcare, including dermatologists and HS specialists that tend to be located in major urban areas. Patient work of HS visibility is also shaped by race given dermatology’s challenging history with diagnosis and treatment of skin disorders in people of color, especially Black people. I show how HS is gendered in the patient work of making HS pain visible to providers, since dermatologists rarely consider pain management outside of post-surgical short-term relief. Finally, I describe the gendered patient work of HS advocacy, including HS patient-led Facebook support groups, leadership of HS advocacy organizations, HS social media influencers and ethnographic field work in HS support groups led by women. The way that HS patients work to navigate their care in the social contexts of race, class, and gender highlighted continued inequalities in healthcare at these intersections.

Author

• Natalie Ingraham, SUNY-Farmingdale