'Diabulima' through the lens of social media: a qualitative review and analysis of online blogs by people with Type 1 diabetes mellitus and eating disorders

Abstract

Aims: To perform a qualitative review of online blogs authored by people self-identifying as having Type 1 diabetes and an eating disorder or 'diabulimia', a term used by people with Type 1 diabetes to describe an eating disorder that is characterized by deliberate restriction of insulin to control weight.

Methods: We conducted a structured qualitative review of online blogs published between 2012 and 2017 authored by people who report having Type 1 diabetes and an eating disorder or diabulimia. The subsequent thematic analysis followed a six-phase process and was conducted by two independent researchers.

Results: From 147 000 search results, 11 blogs (304 posts) matched criteria for further analyses. Three key themes and 18 subthemes emerged: 1) different aspects of bloggers' relationship with insulin, including motives for omitting insulin, secrecy of insulin omission and perception of control; 2) bloggers' experiences of diabetes complications, and diabetes ketoacidosis in particular, as well as their worries about future complications; 3) strategies for recovery and triggers for relapse, which involved diabetes self-management and setting up a support system.

Conclusions: Qualitative analyses of blogs authored by people with Type 1 diabetes and an eating disorder or diabulimia have identified high levels of diabetes distress and provided insight into different motives for insulin omission and strategies for recovery. Considering the limited evidence for effective interventions, these findings may help the development of complex interventions to improve biomedical and psychological outcomes in this group.