“I feel like there’s going to have to be catastrophe before I am seen:..and that is going to be devastating”: Visibility, recognition, and medical silencing in eating disorders and disordered eating

Eating disorders (EDs) and disordered eating behaviours (DEBs) are major global health concerns that remain under-recognized and under-treated. In addition to structural barriers, individuals encounter symbolic and epistemic obstacles, including failures of recognition, diagnostic exclusion, and medical silencing. These processes shape who is legitimized as having EDs/DEBs within biomedical systems and society. To examine how such gaps are produced and navigated, we employ a narrative intersectional methodology. Although analysis was grounded in inductive coding, interpretations were informed by lived-experience alongside narrative and intersectional commitments. We present the overarching theme Who Gets Seen: Recognition and Visibility in EDs/DEBs. Three subthemes emerged: Struggles for Legitimacy , Being Seen, Misread, or Overlooked , and Navigating Self-Recognition . Across themes, participants described barriers to care, recognition, and healing, illustrating how individuals negotiate norms of being seen by family, friends, healthcare providers, and themselves. Findings highlight persistent inequities in recognition and visibility that leave many individuals unnoticed and undertreated. These dynamics reflect epistemic injustice, where credibility and lived realities are undermined within medical systems. Advancing epistemic justice requires reimagining what EDs/DEBs look like and who is considered deserving of recognition and care.