Users’ perceptions of how an unmoderated eating disorder community may benefit or harm their recovery

Abstract

Background: While the negative and positive outcomes of pro-eating disorder groups have been well-documented, more research is needed on the effects of pro-recovery communities. In particular, a gap in knowledge remains surrounding users’ feelings about their experiences in such communities. Using open-ended questions, we surveyed those involved in the recovery community on the social media site Tumblr, to determine how the community helped/did not help with recovery, and how it made them feel about recovery. Methods: Participants (n = 29) answered a series of Likert and open-ended questions. The open-ended questions were examined using thematic analysis to learn about users’ lived experiences. Results: Themes identified included connection/acceptance, motivation/encouragement, content, and competition/comparisons. Participants overall felt that the community helped them feel connected to others and accepted for their struggles and their successes, though a minority did note that such acceptance could sometimes reinforce negative behaviors, and connection could lead to pressure to help others. Participants found both direct advice and indirect support (e.g., encouraging posts) to be motivating for their recovery. Feelings of competition and comparison were mixed; some felt that comparing to others made them feel less than, while others used such comparisons as reminders to stay strong in recovery. Participants indicated that the content within the community varies; sometimes there is a large presence of pro eating disorder posts, while at other times, posts are more positive, motivational, and encouraging. Conclusions: Participants overall indicated that the community had many helpful aspects and made them feel better about recovery. However, the presence of triggering content and competition in particular were notable drawbacks of the community. Overall, recovery communities on unmoderated sites or social media applications may be useful tools during the recovery process, despite some important limitations.