From Lived Experience to Digital Advocacy: Eating Disorder Recovery Content Creation on Social Media

Despite the importance of incorporating individuals with lived experience in the collaborative development and delivery of eating disorder (ED) services, a paucity of research has addressed the role of content creators with lived experience within the context of social media in contributing to help-seeking and recovery spaces. This qualitative study documents content creators' experiences of recovery-oriented content creation and informal digital support through social media platforms. It also explores how content creators contribute to recovery-oriented communication, prevention, and co-design of digital interventions.

A total of 10 Italian female content creators in stable recovery from eating disorders (i.e., no relapse in the past 5 years) were recruited via the Instagram community #DicciComeAiutarti and they were interviewed.

Through a reflexive inductive thematic analysis five overarching themes were identified: (1) Using Lived Experience to Build Recovery-Oriented Narratives and Communities, which highlighted lived experience as a relational resource for fostering recovery and shared meaning online; (2) Social media as a Double-Edged Sword, describing social media as both a supportive and potentially harmful space for ED recovery; (3) Communication Strategies for Effective Engagement, focusing on how participants adapted communication practices to the affordances and limits of different platforms; (4) Social Networking, Prevention, and Health Promotion, which framed online activity as part of a broader prevention and health advocacy effort; and (5) Providing Hope in Digital Peer Support, illustrating how structured peer-support contexts reshaped the sharing of lived experience and hope in recovery.

Finally, the findings of the present study suggest that content creators can meaningfully contribute to the prevention and treatment of ED when integrated into supervised, ethically framed digital networks. The co-production of interventions with individuals who have recovered can engender a more humanised form of digital health communication, strengthening therapeutic engagement and supporting recovery-oriented public health strategies.