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.”
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 f
ew 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.
it’s not just women that struggle with this. my partner, type 1 since he was 18, did this off and on for a few years–just decided the insulin was part of why he was heavy. he’s continued to struggle with his weight but thankfully, after a stay in the icu in dka that led to some counseling and anti-depressants, he’s realized that skipping his insulin is no longer the way to go about dropping the pounds. he’s now off the pills and hitting the gym with me, keeping his sugars in check.
Diabulemia, though publicized heavily in 2007, has been talked about using that name since the mid-90s. See here an article form 1999-2000:
http://www.savvyhealth.com/disp.asp?doc_id=25 and this study from 1997:
http://journal.diabetes.org/diabetesspectrum/97v10n4/pg259.htm
Dr. Brink was my doc growing up. When I fell into diabulemia in the mid-90s, he knew what it was and called it by its name even back then. Recovering is a daily struggle.
If you get the blank stare and the “you’re making this up,” as a patient, you should refer them to Dr. Brink and NEDEC.
Diabulimia has been identified since the mid-1990s. See article here:
http://www.savvyhealth.com/disp.asp?doc_id=25
and this article from Diabetes Spectrum 1997 re: NEDEC (New England Diabetes and Endocrinology Center) with diabulimia mentioned:
http://journal.diabetes.org/diabetesspectrum/97v10n4/pg259.htm
Dealing with diabulimia is a daily struggle. When you know you’ve got the power to lose weight and you are driven by whatever internal mechanisms to want that *so* much, it takes focus and determination not to succumb to the easy way to lose weight.
Any endo who is, NOW, saying the diabulimia is in someone’s head, ought to be talking to the folks who’ve known it and called it what it is for the past 15 years.
Amy,
Thanks for writing & sharing your struggles and big thanks also to Lee Ann and Dr. Goebell-Fabbri for their insights.
I think people with diabetes, (myself included,) can develop al sorts of food issues because so much of diabetes management revolves around food.
People with diabetes not only have to react to their own responses to food, but other peoples response to what we put in our mouths.
Growing up as a t1, certain foods were thought of as “bad,” and other foods were actually called “free foods” and considered good.
And as a kid, some foods (like grapes) actually made me angry. WHY did grapes make me mad? According to the diet given to me by my Pediatric Endo- I could only eat 12 grapes. WHO EATS 12 grapes??
I never had an eating disorder, but I do remember running around the block and doing jumping jacks as an 11 year old to try and get my numbers down and I remember sneaking food and lying about it – a lot.
Today, there is no diet and there are no “bad carbs” in my book. Instead, I prefer to use the term “challenging carbs.”
I believe that this post will help many people with diabetes and their loved ones. Knowledge is power, and in this case, the knowledge/power can be used to recognize, treat and or prevent a very real problem.
Thanks again!
Kelly K
Great minds think alike Amy! I just today posted about digging into my issues around food and self-destructive behavior.
I value the bravery it takes to talk about these things, and I think it is one of the (many) reasons I identify with Lee Ann.
Food is such a complex thing for us living with diabetes.
Thank you for this article Amy, and for sharing your struggles in college. On a similar note, alcohol/drug addicted diabetics can do a similar thing. I was severely addicted to alcohol, to the point that it didn’t make sense to eat in the morning, because I was either too sick or not hungry. Consequently I took no insulin at all. That put me in DKA with a bg of 1500+. I’m lucky to be alive. Just my 2 cents. Thanks!
It is dangerous eating disorder. Patients have to be educated to take prescribed dosage of insulin. They need help from a psychiatrist and dietitian to monitor them regularly and increase the food intake slowly.
I struggled with this as a teenager as well. Along with everything you mentioned in your blog, I think there is another component that contributes to eating disorders (of any type) in type 1′s and that is simply the degree to which we are forced to think about food. I would venture to say that we think about food more than just about anything else in one day because we have to. That’s not natural — we weren’t designed to do that. We’re supposed to throw foods in our mouths when we’re hungry and then go on our merry way. So I think it’s very easy to develop an unhealthy relationship (and even anger) with food as we can’t ever step away from it.
I don’t know about you but every single thing I put into my mouth was under scrutiny from my mother when I was a teenager (and I was never overweight – mostly underweight for the most part). Add to that societal pressures of being thin (especially for teenage aged girls) and it’s a disorder waiting to happen. I’m sure it exists more than we think it does.
Sometimes, that “I never gained weight” thought totally flashes through my mind. In fact, only having been diagnosed about 6 months ago and because of relatively minor symptoms rather than DKA, I even sometimes have a split second where my brain thinks everything was hunky dory and I should just order that big pasta bowl that I love but never seemed to make me fatter. I can totally see how that could be the seed of diabulimia for some people.
It drives me crazy from time to time that I’m now taking care of my body and that means WEIGHT GAIN when I’m already overweight. And exercise? Much more difficult to manage than before. It’s not fair that taking care of yourself can make it harder to take BETTER care of yourself. Again, fodder for psychological issues.
I think there tends to be a lot of blame placed on patients for what is arguably a logical conclusion for any person who tries to “control” a disease by dosing a hormone (insulin) in a non-physiological manner, and restricting their food consumption in an effort to try and control blood glucose levels (the reality is that food, activity and insulin are NOT the only 3 factors that influence blood glucose levels, they are merely the most influential). The sad part is that so many the medical profession fail to recognize these issues, and the need for psychological treatment also adds to what is arguably too much time spent with doctors in the first place. Above all else is the underlying assumption that diabetes is somehow controllable, therefore failure to do so must be the fault of the person afflicted with the disease, but never the disease itself or the treatment protocol prescribed, when both play a role.
Thank you for such an informative post on diabetes and eating disorders. Thank you for reminding the D-community that this problem has not gone away, and based on emails I get from my own readers, continues to cause much intra- and interpersonal pain for too many of those amongst us. Thank you to Dr. Goebel-Fabbri for her research on incidence and treatment; I hope someday there are prevention protocols that emerge from her work. And thank you for the opportunity to share my experience. ‘Diabulimia’ is complex and insidious, but full recovery is possible with appropriate treatment, and it feels better than any magic clothing size or weight on the scale.
Thanks for posting this, Amy. Very informative. That comment by that mother is ringing in my ears, “I hope my daughter never finds out about this.” I don’t think you have to know about eating disorders to develop one.
The weight gain you experience after you start taking insulin is hard to deal with. I remember becoming pudgy around 9 years old, and then having my dance teacher rave about how great I looked and that I must have been going through a growth spurt when I was 11. A few months later, I was diagnosed, and the stretch marks I have on my stomach 12 years later are still mostly from the incredibly fast weight gain that occurred 3 months after diagnoses. It bothered me then and it still bothers me now, why did I have to bypass the “normal” weight for my height? I do obsessively check my total daily dose on my pump and try to keep it below a certain number. I remember my dad telling me in high school that it was because of that “fake insulin” I was taking that I was heavier than other girls. I never struggled with an eating disorder, but I certainly feel the pressure from the world to keep my body below a certain weight percentile.
Thanks for reminding readers that this is a real and potentially deadly disease. My sister in law died at age 26 after living with diabetes for 23 years and diabulemia from her early teens. Because of resistence by physicians and nurses at the time to accept her dual-diagnosis (in the late 80s-early 90s), she received lots of guilt laden “education” about diabetes without help for her eating disorder.
I never developed diabulimia, amazingly. I was diagnosed in 1972, and read all the books they gave me in the hospital. I got the message that high blood glucose levels were like poison. I took 1unit of regular insulin every time my urine glucose showed a trace. We had no meters or A1Cs, and I gained way too much weight. I entered college weighing 123 lbs (at 5’5″) and graduated weighing 160. I avoided complications, and finally lost weight after blood glucose meters were invented, and better insulins were developed. Too much insulin does cause weight gain.
This is a great post. I was diagnosed at age 5 and struggled from age15 to age 28 with all kinds of eating disorders, mostly bingeing and starving and my control was terrrible.
Through the 13 years of hell almost every one of my medical doctors were cruel and insensitive. I was constantly being scolded for not making the right choices and constantly put in diabetes education classes. This led to a lot of shame and guilt for something that I desperately wanted to stop but could not figure out how to stop.
I think it would be interesting if endochrinologists and ophalmalogists could try to practic harm reduction. Yes, eating disorders are awful, but they exist, and will continue to exist, but maybe they could try to be kind and understanding to the patient while they try to get they illness under control.
Thanks for touching on this subject. I have pre-teen daughter with diabetes and body image is always a struggle at this age with or without diabetes. It is always better for parents to be informed and know what to watch for.
Thank you so much for this post on diabulimia. I really appreciate you bringing light to this subject. So many suffer from this disease and yet so few really understand the disease myself have type 1, diagnosed in college (along with celiac and other things too) and soon thereafter became severely bulimic after I watched my weight quickly rebound from my initial diagnosis. However, when I felt the bulimia was not enough, I started restricting insulin.
I still am dealing with diabulimia and bulimia and am working with a great treatment team right now with help and consultation from the incredible (and sadly not mentioned in your post) Barbara Davis Center for Childhood Diabetes in Denver, Colorado. Along this road it’s been very difficult to educate providers (endocrinologists, primary care physicians, nurses, psychiatrists, psychologists, etc) about how diabulimia works and the type of support needed to get better. I’ve been told by endocrinologists that they want nothing to do with the mental health aspects of managing this disease.
And most other providers and friends do not know enough about type 1 to be of great help as many of them have quite a lot of misinformation about type 1 diabetes if any at all. This disease needs both the careful attention of the medical team (D-team) and a mental health team that work together, as you said in your post.
All that said, I hope you know how grateful I am that you bring this subject to the public through your blog. I hope that we can get more awareness of this issue and hopefully in time there will be providers of all types that can competently help address these issues for the many many diabulimics out there.
Best-
ER
Thank you for blogging about DIabulimia, I was also featured in the AP article although the journalist told me it was for a local paper in the states and I would never be identified. Anyway
I have been in recovery for around three years now and I run http://www.dwed.org.uk a non profit founded to ensure that we as a demographic have a voice. We also produce materials that you can download and take to your clinics. If there is anything I can do to help anyone please feel free to email me: info@dwed.org.uk
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