“Diabulimia,” a portmanteau that combines diabetes and bulimia, has been coined in recent years to describe the eating disorder behavior observed in people with type 1 diabetes who manipulate their insulin doses in order to lose weight. The term cropped up in 2006-2007 when a slew of articles were written about this eating disorder symptom. While it’s only in recent years that the media has paid attention to the unique association, the connection between eating disorders and diabetes has been known and researched for some time (here, here, and here, for example).
In September 2009, a group of clinicians assembled in Minnesota to discuss the combination of eating disorders and diabetes. They decided to use the nomenclature “ED-DMT1” to describe individuals with eating disorders and type 1 diabetes and not “diabulimia.” So why does the general public use “diabulimia” instead of “ED-DMT1?” What are the advantages of the label “diabulimia” and what are its limits?
“Diabulimia” is catchy and rolls off the tongue. When people hear the term, they’ll remember it. Media outlets gravitate toward diabulimia for these reasons. “ED-DMT1” doesn’t have the same effect as “diabulimia.” ED-DMT1 is long, cumbersome, and non-specific, though useful for treatment purposes. This also means it’s clinical and may seem alienating to those who suffer.
Additionally, many sufferers identify with “diabulimia”; it’s helpful to put a name on their particular illness. Once an illness has been christened with a name, a community can be created to find support. This is especially essential for those with an eating disorder and diabetes since they often feel lonely because of their peculiar condition. Resources about this dual-diagnosis are scarce, and the first place many sufferers find information and encouragement is through online forums and message groups. Without a widely recognized name, it’s difficult to create a community and to find appropriate professional resources.
There are some downsides to the term, however.Sometimes the effects of portmanteaus like “diabulimia” or “manorexia” is that they are not taken seriously by those who do not have a fundamental understanding of eating disorders. To the public eye, it may be seen as yet another fad that will eventually fade out. This is not helped by headlines that proclaim diabulimia as the new trend in eating disorder symptoms, nor by the already strongly held belief that eating disorders are a choice.
Another problem with the term “diabulimia” is that it reduces eating disorder symptoms in type 1 diabetics to one specific behavior. The reality is that people with diabetes may exhibit many different eating disorder symptoms. Some people with this condition may binge and intentionally misuse their insulin in order to make up for the calories they consumed. Others may eschew insulin altogether, regardless of food intake. There are also those who administer too much insulin in order to give themselves hypoglycemia (low blood sugar) and thus “allowing” themselves to binge. Some exhibit eating disorder symptoms that do not include manipulation of insulin. Too often “diabulimia” is applied to all with an eating disorder and diabetes, and the opportunity for nuance is lost.
The treatment of any person with type 1 diabetes and an eating disorder, regardless of their specific symptoms and whether or not insulin manipulation is one of them, requires the use of an endocrinologist, diabetes nurse educator, dietitians, and therapists who understand the intricacies of type 1 diabetes and eating disorders. Eating disorder treatment centers are beginning to implement programs that tend to the needs of patients with type 1 diabetes, though more research on protocols for these individuals is needed.
I personally do not identify with the “diabulimia” label. I used an array of eating disorder symptoms that did not neatly fall into the anorexia or bulimia category. Like many sufferers of eating disorders, I was diagnosed with Eating Disorders Not Otherwise Specified (recently renamed Otherwise Specified Feeding or Eating Disorder). While I find nothing inherently wrong with “diabulimia,” I think it’s important to let those who struggle self-identify. We should avoid making sweeping generalizations about this dual-diagnosis. The important thing to remember is to not assume.
Amy Gabbert-Montag is the Social Media Specialist for We Are Diabetes and a volunteer for the National Eating Disorders Association. She has a Bachelor’s degree in Women’s Studies.