"This Girl is on Fire": Sensemaking in an Online Health Community for Vulvodynia

Abstract

Online health communities (OHCs) allow people living with a shared diagnosis or medical condition to connect with peers for social support and advice. OHCs have been well studied in conditions like diabetes and cancer, but less is known about their role in enigmatic diseases with unknown or complex causal mechanisms. In this paper, we study one such condition: Vulvodynia, a chronic pain syndrome of the vulvar region. Through observations of and interviews with members of a vulvodynia Facebook group, we found that while the interaction types are broadly similar to those found in other OHCs, the women spent more time seeking basic information and building individualized management plans. They also encounter significant emotional and interpersonal challenges, which they discuss with each other. We use this study to extend the field's understanding of OHCs, and to propose implications for the design of self-tracking tools to support sensemaking in enigmatic conditions.