The speaker asks a room full of people with diabetes to raise their hand if they no longer experience hunger or fullness cues – nearly everyone raises their hands. This is just one of the many reasons that people with diabetes are 2.4 times more likely to have an eating disorder in their lifetime. The eating disorder often comes in the form of insulin omission, commonly known as diabulimia.
Multiple studies over the past 30 years show that 35%-40% of women with type one diabetes (T1D) restrict insulin in order to lose weight, and 11%-17% of men do the same. While these studies focus on people with T1D, a person with any type of diabetes can manipulate their medication in a similar way.
Before Jane was diagnosed with diabetes, there was nothing to suggest an eating disorder might be in her future; then biology kicked in. Type one diabetes confounds a lot of things in a person’s metabolic system beyond the lack of insulin, for example, amylin production ceases, and there is a reduction in leptin.
Jane began to eat based more on external cues which sometimes led to overeating; the overeating always led to guilt which led her not to take her insulin. Before she knew it, she had developed an eating disorder where she could eat anything then simply do nothing to compensate (i.e., not inject).
Steve had always been a bit obsessive, even perfectionist. One might think that managing a condition that requires constant attention to all aspects of life – food, exercise, medication, climate, stress, etc. – would feed positively into that.
However, type one diabetes can be quite distressing for someone with a strong need for control because you can do the same thing three days in a row, yet see three very different results. Eventually, Steve gave up, and when he discovered his gut was disappearing, an eating disorder was born.
Mary struggled with disordered eating for years so when she was diagnosed with diabetes, it created a perfect storm. The emphasis of diabetes education on meal planning, food rules, carb counting, dietary restraint, and weight enabled her disordered eating to blossom into a full eating disorder.
In fact, Dr. Anne Goebel-Fabbri, psychologist and expert on diabulimia, has said that “teaching a person to be a good diabetic is akin to teaching them to have an eating disorder.”
After the talk, a woman approaches the speaker. She has had type 1 diabetes for over 50 years and remembers in her own youth not taking her insulin in order to lose weight. In fact, the first mention of insulin omission and eating disorders in academic literature dates to 1984.
This woman is fortunate and carries minimal long-term consequences. People with diabulimia are three times more likely to develop complications like peripheral neuropathy, retinopathy, and gastroparesis. More frightening is the mortality rate for comorbid T1D and eating disorder – 34%.
Despite the serious nature of diabulimia, finding the appropriate treatment can be challenging. Studies indicate that when diabetes and eating disorders are treated separately, patients show poorer treatment outcomes, higher dropout rates and higher rates of relapse.
Thus, it is not only critical that intervention occurs as early as possible, but that the treatment plan encompasses standard protocols for diabulimia:
- Assessment of level of care, it’s common for someone who hasn’t been taking their insulin to need a higher level of care than someone else with similar psychopathology.
- Involvement of a multi-disciplinary team with the medical, psychological and nutritional providers setting small, incremental goals together.
- Modified meal plans that accommodate the sometimes contradictory management of diabetes and eating disorder recovery, e.g., adjusting a meal’s carbohydrate component based on blood glucose.
- Gradual reintroduction of insulin to minimize the physiological side effects, and a plan to manage new or worsening symptoms such as edema and neuropathy.
- Acknowledgment and inclusion of the role that chronic illness plays in the eating disorder, and strategizing how to deal with its continued presence post recovery.
Type one diabetes is sometimes referred to as a 24/7 job that you never wanted, don’t get paid for and can never take a vacation from. It can become overwhelming. It can also become something that you conquer and rise above. Jane, Steve, and Mary found hope and recovery. So can you!
- Jones JM, et al. Eating disorders in adolescent females with and without type 1 diabetes: cross sectional study. BMJ. 2000;2000(320):1563–1566.
- Goebel-Fabbri AE. Diabetes and Eating Disorders. Journal of Diabetes Science and Technology. 2008;2(3):530-532.
- Doyle EA, et al. Disordered Eating Behaviors in Emerging Adults with Type 1 Diabetes: A Common Problem for both Men and Women. J Pediatric Health Care. 2017;31(3):327-333.
- Lee-Akers D, et al. “Biological & Psychological Risk Factors for Eating Disorders in Type 1 Diabetes.” presented at American Association of Diabetes Educators Annual Meeting, Indianapolis, IN, August 2017.
- Rydall A, et al. Disordered Eating Behavior and Microvascular Complications in Young Women with Insulin-Dependent Diabetes Mellitus. New England Journal of Medicine 1997; 336: 1849-854.
- Nielsen S, et al. Mortality in Concurrent Type 1 Diabetes and Anorexia Nervosa. Diabetes Care. 2002;25(2):309-312.
- Colton PA, et al. Eating disorders in girls and women with type 1 diabetes: a longitudinal study of prevalence, onset, remission and recurrence. Diabetes Care. 2015;38(7):1212-1217.
- Goebel-Fabbri, AE, et al. Outpatient Management of Eating Disorders in Type 1 Diabetes. Diabetes Spectrum. 2009;22(3):147-152.
- Bermudez, O, et al. Inpatient Management of Eating Disorders in Type 1 Diabetes. Diabetes Spectrum. 2009;22(3):153-158.
Dawn Lee-Akers is the Medical Outreach Coordinator for Diabulimia Helpline, a non-profit organization devoted to support, education and advocacy for those facing the comorbidity of diabetes and eating disorders. She has spent the last nine years researching and developing resource materials for both patients and healthcare providers.
She serves as an administrator for three online support groups and works directly with clients and families on treatment referrals to ensure they receive the best possible treatment and support. For more information, contact Diabulimia Helpline at 425-985-3635 or [email protected]
The opinions and views of our guest contributors are shared to provide a broad perspective of eating disorders. These are not necessarily the views of Eating Disorder Hope, but an effort to offer a discussion of various issues by different concerned individuals.
We at Eating Disorder Hope understand that eating disorders result from a combination of environmental and genetic factors. If you or a loved one are suffering from an eating disorder, please know that there is hope for you, and seek immediate professional help.
Published on September 12, 2018.
Reviewed & Approved on September 12, 2018, by Jacquelyn Ekern MS, LPC
Published on EatingDisorderHope.com