By Kat Geiger, LCSW
Clinical Director, Center for Hope of the Sierras
An increasing number of eating disorders and diabetes treatment professionals are recognizing diabulimia as a serious problem, with more than 30% of females with Type 1 Diabetes reporting deliberate insulin restriction as a means of losing weight.
Diabulimia is a laymen’s term used to describe a serious eating disorder wherein people with insulin dependent diabetes restrict their insulin doses so their bodies cannot fully absorb and utilize the carbohydrate they eat; the excess glucose that accumulates in the cells is excreted through the urine. This becomes a form of purging calories and is similar in intent and function to behaviors exhibited by people struggling with bulimia. However, diabulimia tends to be much easier to hide than other forms of eating disorders and is thus much more pernicious. As one client put it, “Having diabetes is the easiest way to have an eating disorder. I can go out to eat with my friends, eat anything I want, and purge during the meal without anyone knowing I’m doing it.”
Most people I speak to are surprised to learn that this behavior is prevalent among Type 1 diabetics. It’s important to note that this doesn’t necessarily indicate these individuals all struggle with full-blown eating disorders. Many may struggle with mild to moderate body image issues or disordered eating patterns. However, what makes the ubiquity of these behaviors so dangerous is nobody can predict ahead of time who will develop an eating disorder and who will be protected. In other words, one person might be able to sometimes under dose insulin without it going much further than that (although this is still dangerous and should not be done). The next person might do exactly the same thing and be triggered into an eating disorder. What makes this behavior so scary is none of us can predict from the outset which one is more likely to develop an eating disorder. What we do know is women with Type 1 diabetes are more than twice as likely as women in the general population to develop an eating disorder, with higher incidence of risk factors such as depression, strict food rules, high attention to changes in body weight, unresolved grief over diabetes diagnosis, shame about food choices, the need to track carbohydrates, and emphasis on exercise.
At Center for Hope, our eating disorders treatment center, 30% of our clients are diabetics, most with significant histories of restricting insulin. Many of our clients have struggled silently with their disorders for years without their treatment teams, families or friends being fully aware of the problem. It doesn’t help that this combination of eating disorder with diabetes doesn’t have an official name; though it’s colloquially termed diabulimia, those who seek treatment usually receive an official diagnosis of bulimia or the catch-all diagnosis of other specified feeding or eating disorder, neither of which accurately reflect the unique struggles of this population. The lack of official diagnosis mirrors the general lack of awareness around this disorder and perpetuates the isolation, depression and hopelessness often present among those who struggle with eating disorders, preventing them from seeking much needed help.
It’s time for society and the treatment community to catch up. Insulin dependent diabetics who restrict insulin experience much earlier and more severe onset of diabetes complications than do diabetics who effectively manage the condition. At Center for Hope, we often treat men and women in their twenties and thirties who already suffer from neuropathy, slow wound healing, retinopathy, and other irreversible health complications typically not seen until much later in life, and although our clients prove every day that full psychological and emotional recovery from this disorder is possible, the lingering physiological complications from years of insulin restriction are heartbreaking. As treatment providers, friends, and family, we must start doing a better job of talking about the incidence of eating disorders and insulin restriction among diabetics, of creating better screening systems and support systems, and of improving access to treatment.
It is not my intent to present a diabetes diagnosis as a fast track to an eating disorder. It isn’t. Certainly, we need to get better at having conversations about why diabetics are at increased risk for eating disorders and how we can get better at protecting against those risk factors. That said, we all know many people who have diabetes, manage it well, and live full, wonderful lives, seamlessly integrating good diabetes care into other daily activities. How can we make sure more diabetics are able to do this?
- Get rid of the food police. People with diabetes can eat the same foods as non-diabetics, they just have to dose for it.
- Speak up when someone turns diabetes into a punch line about sugar. Diabetics can eat sugar and have good diabetes management!
- Teach flexibility around food and numbers using the Intuitive Eating model rather than rigidity or perfectionism based on outdated ideas about the diabetic diet.
- Improve screening for depression and grief related to a diabetes diagnosis. Eating disorders often develop as a way to cope with other mental health struggles.
- Use body positive language. Body dissatisfaction can make the appeal of quick weight loss via insulin restriction very difficult to ignore.
- Connect with diabetes communities. Isolation and feeling different from one’s peers can increase risk for developing an eating disorder.
- Remember, above all, diabulimia is not about lack of diabetes education. Continued diabetes mismanagement is a red flag that it’s time to start talking about whether deliberate insulin restriction is present. Diagnosis and treatment within the first year of onset predict the best chance of full, long term recovery.
The strongest messages I can give about diabulimia is one of hope. Eating disorders do not have to be lifelong illnesses and we do not have to accept them as such. Recovery is possible and there is a beautiful, full life on the other side!