Contesting care, navigating paradoxes: a thematic reflexive analysis of eating disorders advocates voices

Abstract Eating disorders (EDs) are a growing public health concern in the United States, yet advocacy for improved treatment and awareness remains underexplored in academic research. While advocacy movements in fields such as HIV/AIDS or breast cancer have received sustained attention, eating disorder advocacy has rarely been studied beyond program evaluation or prevention campaigns. This study examines the roots and practices of ED advocacy in the United States, focusing on how advocates describe their strategies, motivations, and encounters with systemic barriers. A qualitative design was employed, using five semi-structured interviews with U.S.-based eating disorder advocates recruited from nonprofit organizations. Data were analyzed through reflexive thematic analysis, informed by conceptual lenses of medicalization and neo-pluralist interest group theory. Three main themes emerged: (1) Stigma as both barrier and motivator: advocates drew on lived experience to expose stereotypes and push for more inclusive approaches to care, (2) Navigating structural constraints: participants emphasized how fragmented and uneven insurance systems restrict access to treatment, aligning with critiques of managed care; (3) Strategic repertoires: advocates deployed storytelling, cost-based arguments, education, and coalition-building to influence public opinion and policy. ED advocacy reflects a paradox: while it challenges stigma and promotes inclusion, it also operates within a healthcare system shaped by profit-driven logics and resource scarcity. Lived experience lies at the heart of advocacy, serving simultaneously as a source of personal healing and as a form of political leverage. Future research could examine relationships between advocates and healthcare practitioners, the transition from patient to advocate, and the evolving role of social media in shaping advocacy strategies.