"I Am An HS Warrior": A Reflexive Thematic Analysis of #HidradenitisSuppurativa on TikTok.

BACKGROUND

Hidradenitis suppurativa (HS) is a physically debilitating skin disease characterized by nodules and abscesses in intertriginous areas. There is a profound psychosocial element to HS, as it contributes to higher mental comorbidities, lower self-esteem, and diminished quality of life. TikTok represents an active space for HS patients to share their experiences.

OBJECTIVES

This study aims to perform a reflexive thematic analysis of HS-related videos on TikTok to explore the themes within videos shared by content creators.

METHODS

This study utilized Braun & Clarke's protocol for reflexive thematic analyses. The first 108 consecutive videos identified by searching #HidradenitisSuppurativa on TikTok were included in the pool. Included videos were posted from 2020 to 2025, in English, and conceptually related to HS.

RESULTS

Ninety-three of the original 108 videos were retained, with a total of 109.3 million views. 69.9% of the included videos were generated by lived experience creators, followed by medical professionals (17.2%). The majority of content creators were female (67.7%), and 23.7% of videos were sponsored product endorsements. Ultimately, 6 themes emerged: Promoting Products (29%), Educational Empowerment (27%), HS as Lived Reality (23%), Advocacy Through Visibility (13%), Medical Mistrust (3%), and Internalized Stigma & Self-Blame (3%).

CONCLUSION

This analysis underscores the importance of addressing facets of HS, which may be routinely overlooked in clinical evaluations, including the role of alternative therapies and patient education. Clinicians should recognize TikTok as a platform for self-expression among patients with HS and use this awareness to support the psychosocial needs revealed in this study.