A Serious Eating Disorder Called “Diabulimia”

Diabulimia is an eating disorder that is unique to people with type 1 diabetes (T1D). A person is experiencing diabulimia when they are showing bulimia symptoms and voluntarily withholding insulin in order to have hyperglycemia-induced glycosuria (presence of sugar in the urine) and lose weight.

A common occurrence

The prevalence of diabulimia among people with T1D is estimated at 6% to 7% and is higher among young people aged 15 to 30, particularly women.

Some people may occasionally exhibit diabulimia-related behaviours without receiving a diagnosis. In fact, 1 out 5 women and 2 out of 5 men will sometimes voluntarily restrict or withhold an insulin dose in order to lose weight, and as many as 40% of teenage girls and young women display the same behaviour.

How does it affect health?

Diabulimia has significant physiological and psychological health impacts. The condition is associated with chronic hyperglycemia (high HbA1c level), which leads to a higher risk of infections (e.g., urinary tract, staphylococcus), vascular complications and diabetic ketoacidosis, as well as a significantly higher mortality rate.

How do attitudes and perceptions of weight and insulin differ?

Most people with T1D view insulin as an essential drug that allows them to control their blood sugar and prevent long-term complications associated with diabetes. People with diabulimia view insulin in a different, very complex way. They often have an emotionally charged relationship with insulin, and they experience feelings of guilt and uncertainty. They closely associate insulin with weight gain, which leads to a great level of anxiety.

What are the signs of diabulimia? What should I do if I believe I, or someone I know, might have it?

Try and focus on your relationship with insulin. How do you feel and what are your thoughts when you inject insulin? If you feel that injecting insulin often inspires negative feelings (e.g., fear, anxiety), you should seek support from your loved ones and healthcare team. The following are other signs that you should watch carefully:

• Excessive worry about weight or body image
• HbA1c level over 9% for an extended period of time
• Depression, mood disorder, fatigue
• Eating in hiding or doing excessive physical activity
• Recurring urinary tract infections
• Cancelling medical appointments

If you experience any of these situations, it is very important that you mention it during your next medical appointment. Discussions around T1D should focus more heavily on mental health issues.

Useful links:

• Anorexie et boulimie Québec: Help and reference line
• Prevention and support for people living with eating disorders (in French only)
• Tel-Jeunes: Eating disorders
• ÉquiLibre: Promoting a healthy body image (in French only)

BETTER articles:

• Taking Care of Your Mental Health When Living With Type 1 Diabetes
• Disturbed eating behaviours and type 1 diabetes

References:

• Torjesen I. et al. (2019). Diabulimia: the world’s most dangerous eating disorder. BMJ. 
• Hay P. Book (2019). Review:Prevention and Recovery from Eating Disorders in Type 1Diabetes:Injecting Hope. J Eat Disord. 7:3. doi: 10.1186/s40337-019-0233-7. PMID: 30728963; PMCID: PMC6352426.
• Paoli, T.D., & Rogers, P.J. (2017). Disordered eating and insulin restriction in type 1 diabetes: A systematic review and testable model. Eating Disorders, 26(4), 343-360. doi:10.1080/10640266.2017.1405651
• Staite, E., Zaremba, N., Macdonald, P., Allan, J., Treasure, J., Ismail, K., & Stadler, M. (2018). ‘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. Diabetic Medicine, 35(10), 1329-1336. doi:10.1111/dme.13700
• Wisting, L., Bang, L., Skrivarhaug, T., Dahl-Jørgensen, K., & Rø, Ø. (2015). Adolescents with Type 1 Diabetes – The Impact of Gender, Age, and Health-Related Functioning on Eating Disorder Psychopathology. Plos One, 10(11). doi:10.1371/journal.pone.0141386
• Luyckx, K., Verschueren, M., Palmeroni, N., Goethals, E., Weets, I. and Claes, L. (2019). Disturbed eating behaviors in adolescents and emerging adults with type 1 diabetes: A one-year prospective study. Diabetes Care, 42(9). doi: 10.2337/dc19-0445