Beyond the skin: Stories of advocacy and resilience from women with Hidradenitis Suppurativa

Abstract

Hidradenitis Suppurativa (HS) is a chronic, recurrent inflammatory skin condition that significantly impacts quality of life. The purpose of this qualitative study was to gain a deeper understanding of the lived experiences of women diagnosed with HS by amplifying a more integrative, strength-based understanding of the condition. We explored the lived experiences of 25 Canadian women with HS, focusing on their challenges with HS and how they overcame them through strategies of resilience and meaning-making. Reflexive thematic analysis techniques, situated with a feminist social constructionist lens, generated four major themes: (1) Developing Agency in Symptom Management, (2) Cultivating Methods to Cope, (3) Harnessing One’s Voice for Advocacy and Change, and (4) Gaining Insight and Growth Through Life-Long Learning. This study provides critical insights into improving care and support for women with HS, emphasizing the importance of patient-centered and holistic approaches to HS care that prioritize resilience and address systemic inequities.