“It’s Like Having an Uncontrolled Situation”: Using Body Maps to Understand the Embodied Experiences of People with Hidradenitis Suppurativa, a Chronic Dermatological Condition

Abstract

Hidradenitis suppurativa (HS) is a chronic, inflammatory, and often debilitating skin condition that includes painful “flares” in the groin, genital, and underarms. (1) Background: Patients with HS have the highest reported mental health comorbidities among dermatological conditions. Qualitative social science research about HS is limited, so this study aimed to understand the lived experiences of people with HS through body mapping. Body mapping is a participatory research process where participants illustrate a drawing of their body with images, symbols, and words that represent their embodied experience. (2) Methods: This study recruited 30 participants from a previous survey about HS experiences. Participants selected from pre-made body silhouettes based on their body shape, illustrated a body map about their HS experience, then shared their body map during in-depth interviews. Interviews and body maps were analyzed with the same codebook created with inductive and deductive codes. (3) Results: The body map drawings yielded rich visual data and the mapping process helped participants express their HS experiences in unique ways that cannot always be captured with textual data alone. (4) Conclusions: This study adds to the limited social science literature about HS and introduces body mapping as a relevant qualitative method for exploring chronic dermatological conditions.