“Have a Flare with Me!”: Disability Storytelling on TikTok

Abstract

ABSTRACTPeople with shared health conditions, including contested conditions like central sensitivity syndromes (CSSs), are utilizing TikTok to both seek and tell visual illness stories—and to co‐create health information in creative, mimetic, and platform‐specific ways. This poster presents results from a pilot qualitative content analysis study of 100 TikTok videos and comments by people personally experiencing #fibromyalgia, a pilot codesign session with a CSS TikTok community member, and late breaking results from a dissertation in progress. These studies are the first stages in the goal to understand and support these embodied, creative, and often‐collective storytelling abilities, necessary within the CSS community experiencing invisibility, stigma, and difficult diagnoses. The visual poster format enables discussion, with examples of TikTok videos illustrating 7 identified themes, iconographic elements, and examples of reoccurring creative choices and collective storytelling features. Last, of broader interest in our field, this poster presents methodological challenges and sparks for discussion of best methods for TikTok research, including: (1) a novel sampling approach addressing gaps in current research and the slippery definition of TikTok communities, (2) a brief description of preliminary codesign findings and the method's promise in this domain, and (3) discussion of critical disability studies perspectives guiding this research.