Rare vs. Rarely Diagnosed

Counterstory and Coalition Building in Online Patient Advocacy Communities

Abstract

This article demonstrates how online health communities use intersectional practices of counterstory and coalition building to advocate for their illnesses within the greater medical community. This study analyzes 320 online postings, 84 published narratives, 30 written reflections, and 10 interviews in an online health community for Asherman syndrome, a rare illness that develops after reproductive surgery. The findings of this study highlight how patients pose an important counterstory of Asherman syndrome as a “rarely diagnosed” condition to increase awareness of the illness among medical professionals. Additionally, individuals use their own unique positions with coalitions to create TPC that leads to changes in healthcare outcomes. This article argues that TPC researchers can amplify this patient-created TPC to help intervene in healthcare concerns.