In the summer of 2007, a seemingly new eating disorder emerged in mainstream media, one that was directly tied to diabetes. It was dubbed "diabulimia," in which a person with diabetes restricts or completely stops taking their insulin in order to lose weight. Like most things in pop culture, diabulimia was a flash in the news pan and then quickly disappeared from public consciousness.
But this isn't some fleeting fashion trend; just because it isn't talked about currently doesn't mean it has gone away. I wondered what was happening with and for this dichotomous health condition, and to find out, I turned to some folks in the know.
One prominent expert in the field of eating disorders and diabetes is Dr. Ann Goebel-Fabbri, a psychiatrist at the Joslin Diabetes Center in Boston. One of the first things she wanted to clarify was the name itself. Turns out, "diabulimia" is not recognized by doctors or mental health professionals as a real condition, so patients describing themselves as being diabulimic will likely get blank stares or even be told they are "making that up."
The second issue is that diabulimia sounds a lot like bulimia, except that patients with bulimia engage in binging and purging food. Neither of this happens in cases of so-called diabulimia, Dr. Goebell-Fabbri explains, which gives patients leeway in denying that they even have a problem.
"The problem that really needs to be appreciated is that these women are struggling with something that is extremely complex," she explains. At a summit of mental health professionals in 2009, the official conclusion was to diagnose this condition as both an eating disorder and diabetes. "It's the two co-occurring conditions in the same person."
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How it begins
Like most types of eating disorders, it is deeply rooted and is most often seen in women (and men) who already have a major issue with body image and food. In people with diabetes, it's often triggered around the time of diagnosis, or is brought on by the memory of diagnosis.
"We have a cultural that admires and reinforces weight loss," Dr. Goebell-Fabbri explains. "So what people remember is 'Wow, I could eat anything I wanted and I was losing weight. I felt crummy, but everyone was telling me how great I looked.' They are going to hang on to that memory and I think that's where it potentially begins."
For type 1 diabetic and fellow D-blogger Lee Ann Thill, dealing with food and body image has been a lifelong struggle. Starting in high school and lasting for over a decade, Lee Ann dealt with bulimia and anorexia, while also cutting back her insulin doses to lose weight. During a period of weight gain in high school, her mother urged her to take less insulin, as an impetus to eat less.
"I started eating less food so I was taking less insulin, and that's when I developed this idea that more insulin was bad," Lee Ann shares. "It became almost like a phobia, for lack of a better word. I became afraid to take too much insulin because that would automatically mean I would gain weight."
Effects and causes
An eating disorder + diabetes can be recognized by:
- A1C is dangerously elevated
- repeated episodes of DKA
- extreme concern with body image and weight
- change in eating pattern
- intense exercise
Of course some of these are the same effects anyone would experience who misses insulin doses frequently, whether due to simple forgetfulness or burn-out from diabetes management.
Research says that upwards of 30% of people with type 1 diabetes restrict insulin at some point, but those with this eating disorder have become "entrenched in the pattern of insulin underdosing or restriction." Much like someone suffering from depression and who can't simply "snap out of it," an eating disorder is a psychiatric issue.
"This is not a behavior choice," Dr. Goebell-Fabbri explains. "It's not something you can just talk your patient out of. It is a psychiatric disorder and it needs treatment. No one who is thinking in a positive, healthful way would choose this. They are trapped in a very negative spiral."
Here I should mention that I had my own struggles with an eating disorder during college (long before I became diabetic). I remember overhearing other girls saying things like, "I wish I could catch anorexia for a week or two!" As if it were some bug that simply made you lose weight. I wondered if they knew how obsessive/ compulsively miserable I was, and how many years of therapy are often required to break the cycle?
How to get help
As Dr. Goebell-Fabbri explained, diabulimia is not a clinical diagnosis, so telling a physician you have "diabulimia" might not get you very far. She has two suggestions for people struggling with this:
First, if you feel comfortable with your current D-team, talk to your endocrinologist or diabetes educator and explain what is going on, and hopefully they will be able to direct you to a psychologist or therapist in your area that will help.
If you don't have an open and comfortable relationship with your doctor, then it's best to find an eating disorder specialist, who can initiate treatment. But Dr. Goebell-Fabbri stresses the importance of having both an eating disorder therapist and your diabetes team on the same page: "I think treatment works best when the teams are working together and speaking the same language. They have to be able to modify treatment goals for the patient, otherwise the patient will get mixed messages."
In therapy, Lee Ann not only addressed her issues with her eating disorder, but also her diabetes as a whole. She says, "A big piece of it was, because I had grown up with a disease, part of my concept of myself was that I felt inherently 'broken' and not healthy. During therapy, I came to a realization that I wanted to be a healthy person."
Unfortunately, there are very few places right now that specialize in the diabetes/eating disorder combo. In addition to the Joslin Diabetes Center in Boston, treatment and resources can also be found at the Behavioral Diabetes Institute in San Diego, the Center for Hope in the Sierras in Reno, NV, and Park Nicollet Melrose Institute just outside Minneapolis.
On being supportive
During the diabulimia media blitz, Lee Ann was interviewed for an AP article, and afterward, received some strange reactions from parents she knew.
"One mom told me, 'I don't want my daughter to find out about this.' I felt like it was pretending your kids won't find out about sex and drugs," Lee Ann says. "I'm not a parent, so I don't know if I would feel differently, but I think it's really important to have honest discussions about the fact that this sort of thing happens to some people. I think in the end, if you have open discussions and an honest relationship with your kid, then if he or she starts having a problem they are more likely to talk with you about it."
Lee Ann, along with Dr. Goebell-Fabbri, also believes that parents are the best models for healthy behavior and are the best defense against media messages and peer pressure that prize a thin figure over a healthy body. Although oddly in my case, it was more about control than anything else; I felt helpless to control the environment around me, but I sure as hell could control what I ate or didn't eat. I'm guessing this plays in as well for teens with diabetes, struggling to have some form of power over their constraining illness.
Still, the family dynamic can make or break successful recovery.
"I think parents and family members can work really hard to create a family environment where weight is not emphasized and eating is normal and flexible," Dr. Goebell-Fabbri advises. "You can eat cookies and carrot sticks, as along as it's in moderation. Physical activity is best when moderate and not extreme. I think we have to work hard in general at an early age, whether young people have diabetes or not, to give them confidence in their bodies — to understand that bodies are a miracle, in what they are able to do for us and who they let us be."
Hear hear on that. I would agree that for me, recovery from an eating disorder really began when I finally stopped hating my own body. Adding diabetes to the mix makes it that much harder to be at peace with your physical self.