“My Eating Disorder Story” – An Interpretative Phenomenological Analysis of Social Media, Narrative Identity, and Patient Influencers in Eating Disorder Recovery

Background: As recovery stories about eating disorders (EDs) proliferate on social media, many individuals with lived experience are emerging as informal health influencers. While these online spaces can offer community and information, they also shape how individuals understand and perform their identities in recovery. This study investigates how young women in ED recovery use social media not only to seek support, but to construct, maintain, and sometimes step away from their identities as patient influencers. Methods: We conducted in-depth, semi-structured interviews with 19 women in the United States who actively documented their ED recovery journeys on platforms like Instagram, TikTok, and YouTube. Using interpretative phenomenological analysis (IPA), we explored how participants made sense of social media’s role across different stages of their recovery. Results: Findings reveal a U-shaped pattern of social media engagement. Participants initially used social media in ways that reinforced disordered behaviors, immersing themselves in content that emphasized dieting, body comparison, and perfectionism. During early recovery, many chose to withdraw from these platforms to protect their mental health and reduce triggers. Later, they re-engaged with social media more intentionally, seeking out pro-recovery communities, reliable health information, and opportunities to tell their stories. Through public storytelling, participants reconstructed their identities, found accountability, and connected deeply with peers. However, some eventually distanced themselves from ED-centered content to grow beyond the patient influencer identity, reflecting the fluid, evolving nature of recovery and online self-presentation. Conclusions: By centering the voices of patient influencers, this study highlights how social media functions both as a risk and a resource in ED recovery, simultaneously shaping psychological well-being, social support, and identity work. These insights underscore the need to view patients as active agents navigating digital spaces and call for treatment approaches that address the online environments where recovery, support, and stigma are continually negotiated.