Hidradenitis Suppurativa on TikTok: Representation, Treatment Messaging, and Psychosocial Themes

Hidradenitis suppurativa (HS) disproportionately affects women and individuals with skin of color (SOC) and is associated with a significant psychosocial burden. TikTok has become a major platform for HS storytelling, yet representation, treatment messaging, and psychosocial factors remain poorly characterized.

The objective of this study is to characterize creator demographics, SOC representation, treatment discussions, and psychosocial themes in highly visible HS TikTok videos.

We performed a cross-sectional content analysis of the top 200 TikTok videos under four HS-related hashtags. After removing duplicates and unrelated posts, 133 videos were coded for creator type, content format, gender, Fitzpatrick type, treatment, and psychosocial themes. A 20% subsample was dual-coded to assess interrater reliability. Engagement rates were calculated, and group differences were assessed using t-tests and one-way analysis of variance.

Most videos were created by patients (90%), with women representing the majority of creators (90%). Most videos were testimonials (80%). Representation of Fitzpatrick IV-VI was high (57%). Treatments discussed included guideline-supported therapies (24%), over-the-counter adjuncts (29%), and alternative remedies (19%). Psychosocial themes of empowerment (88%) and mental health (36%) were common. There was no significant difference in engagement across creator type, skin tone, or content format.

HS TikTok videos are dominated by women and SOC creators sharing testimonials about lived experiences. While psychosocial support is prominent, guideline-based treatment information and dermatology provider input are limited, highlighting an opportunity for clinicians to share accurate and inclusive HS education on social media.