What is Diabulimia?
According to Marilyn Ritholz, PhD, (Senior Pychologist at Joslin Center for Diabetes) and Ann Goebel-Fabbri, PhD, a licensed psychologist who worked at Joslin for 16 years, women with Type 1 have close to two and a half times the chance of developing an eating disorder. Those are striking odds. And when you look at the psychological challenges that come with managing a chronic illness on your own, coupled with a uniquely attentive relationship to food and a life-saving medication that can sometimes cause weight gain, it may not be surprising that having Type 1 diabetes puts so many women at risk. Beyond Type 1 wanted to know how eating disorders are unique in populations with Type 1 diabetes. What are the warning signs of the Type 1 eating disorder “diabulimia”? What are the best forms of treatment? What behaviors or psychological characteristics can put a person with Type 1 at a higher risk for developing it?
What is anorexia nervosa?
Anorexia is an eating disorder characterized by an abnormally low body weight, intense fear of gaining weight and a distorted perception of body weight. People with anorexia place a high value on controlling their weight and shape, using extreme efforts that tend to significantly interfere with activities in their lives.
What is bulimia nervosa?
Bulimia nervosa is an eating disorder usually characterized by periods of binging – or excessive overeating – followed by purging. People with bulimia have a fear of gaining weight; however, that does not mean all people with bulimia are underweight. Some people with bulimia are overweight or obese. They attempt to use purging to manage their weight or prevent additional weight gain (Bulimia.com).
What is diabulimia?
The term “diabulimia” (also known as ED-DMT1) has often been used to refer to this life-threatening combination and the unhealthy practice of withholding insulin to manipulate or lose weight. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin and otherwise have normal eating patterns (WeAreDiabetes).
What are warning signs of diabulimia?
- Rapid weight loss with normal or heavy eating
- A high A1C
- Physical exhaustion
- Increased appetite (the body’s cells are essentially starving)
- Mood changes
- Decreased concentration and motivation (this can be seen in changes in academic and professional performance)
- Recurrent DKA without any explainable cause (this can be life-threatening)
“It really is all the symptoms found in early diabetes diagnosis,” says Ann Goebel-Fabbri, PhD. “They are turning back the clock in disease state so to speak.”
“Diabulimia, like most eating disorders, begins with low self-esteem. There is a concern about weight, body image and an aim for perfectionism,” says Marilyn Ritholz, PhD. “In this way people who suffer from this are more black and white thinkers – the grey area is more difficult to comprehend or accept.”
How do you know if you are at risk for diabulimia?
“Insulin restriction alone whether it’s at the level of severity of an eating disorder diagnosis is at around 30% of women with Type 1. People refer to it as a ‘sub-threshold set of symptoms’ that already shows serious medical outcomes. The larger cohort is still at medical risk. Sporadic insulin restriction often becomes a full blown eating disorder overtime” (Ann Goebel-Fabbri, PhD).
Why is diabulimia dangerous?
“If you have diabetes and are not taking insulin, your organs will become saturated in glucose,” says Marilyn Ritholz, PhD. “You can put your body into a state of DKA, and you can experience the long-term complications of diabetes such as retinopathy, nephropathy and neuropathy. If left untreated, it can lead to death.”
“Eating disorders are the most lethal psychiatric disorder that exists,” says Ann Goebel-Fabbri, PhD. “Add Type 1 to the clinical picture and they are still more dangerous. Even though they’ve had fewer years of diabetes, they’ve had longterm exposure to high sugar. They have higher rates of diabetes complications earlier in their disease. That means much more need for specialty healthcare. There’s more need for emergency visits for DKA; these patients are much more fragile medically.”
How do people learn about diabulimia?
“Leading up to diagnosis, you have profound and rapid weight loss. You get treated and your body gets healthier. Someone with Type 1 may not see that process as healing but as ‘treatment made me gain weight.’ I have heard of people also learning about insulin restriction for weight loss in books, online and at diabetes camp. A very positive thing in diabetes-related social media, we tend to see more of a focus on recovery” (Ann Goebel-Fabbri, PhD).
What are the pros and cons of using the label “diabulimia”?
“If something has a name, it’s a real thing and you aren’t the only one struggling with it. Then the shame is potentially reduced. In that way, the name helpful.
“Conversely, because it has ‘bulimia’ in the name some may think, ‘well, I don’t make myself vomit, so I don’t have a problem.’ They may not recognize that insulin restriction is far more dangerous than calorie purging. On the other hand, people may have all the symptoms of anorexia and aren’t restricting insulin, and they may not be recognized” (Ann Goebel-Fabbri, PhD).
Are men with Type 1 at risk for diabulimia?
“This has not been studied broadly. There is a general statistic that approximately 1 out of every 10 with an eating disorder is male, but we don’t know how that applies to diabetes. What we do know is that binge eating disorder (binge eating without purging) affects 50% women and 50% men, but this is primarily with Type 2 diabetes” (Ann Goebel-Fabbri, PhD).
How can traditional treatment for eating disorders be ineffective for those with Type 1?
“There are research supported techniques for eating disorders, but we don’t know how well they work specifically in Type 1. What I often rely on in treatment is integrating aspects that are unique to type 1 into those standard treatments,” says Ann Goebel-Fabbri, PhD. “Traditional treatment focuses on label reading – not thinking of food as calories but as sustenance. It also recommends listening to your body when you’re hungry and full. The problem in Type 1 management is that in order to use insulin, you have to know carbohydrate amounts. There are times you are forced to eat whether or not you’re hungry. This idea of intuitive eating is not as applicable and needs to be adjusted for those with Type 1.
“You can’t say to someone with Type 1, ‘don’t acknowledge weight,’ when they had that real experience of severe weight loss. With the weight issue, they need to know that weight can be managed with more sophisticated insulins and technologies available to manage Type 1 now.”
Marilyn Ritholz, PhD, recommends, “For the patients I work with, I try and meet as frequently as possible. There are many eating disorder centers in the United States, but many don’t focus on diabetes eating disorder programs. It’s important to know that an eating disorder with diabetes is a different eating disorder and that the patient needs to be monitored carefully. They need a team approach including: an endocrinologist and psychologist or psychiatrist if medication is needed as well as a diabetes educator.”
How do you effectively treat diabulimia?
“Treatment needs to be really modified, because it’s actually very dangerous to go rapidly from profoundly elevated glucose to target numbers. It can result in something called treatment-induced complications. It has to do with the speed and the rate of glucose decrease. The process of decreasing the glucose range needs to be gradual, but there’s no standard medical protocol as of now. There’s research happening, which is promising, but what we know is that it needs to happen slowly. For some patients, doing it this way might feel more manageable and realistic as a goal. And sometimes by doing it more gradually, the fluid related weight gain is tempered.
“Recovery depends on developing an improved sense of self. There’s also a heightened risk of depression in eating disorders when you have Type 1, so quite often patients need to work with a psychiatrist as well and receive medication if that’s needed. But also finding things in your life that give you a sense of worth, that are interesting and challenging helps. That’s how we build our sense of having meaning in the world, whether we have eating disorders or not. And that is very much put on hold or stopped altogether when they’re dealing with the severe impact of such longstanding high glucose. You’re barely able to get through the day because of your low energy level.
“I also look at how to improve their intrapersonal skills. Their lives have been on hold and they haven’t experienced other things that their peers would have experienced. I think they should have the opportunity to voice how angry they are about diabetes and how they feel when they see numbers out of range and complications are coming and sometimes they throw up their hands and give in. Treaters need to present that hope that it isn’t futile and help patients move through that.
“These are not patients who don’t care about their diabetes and are in denial, they don’t need lectures about their medical risks; they are aware. It is a psychiatric issue; it isn’t a case of a lack of understanding” (Ann Goebel-Fabbri, PhD).
What are reasons that someone with Type 1 might gain weight after diagnosis?
“When people have been in DKA or have had high glucose for so long, they gain a lot of weight extremely rapidly. It’s not what I call ‘real weight;’ it’s actually ‘severe water retention.’ But it’s noticeable in their body shape and how clothes fit, and if you are extremely sensitive to weight gain, it is terrifying. I think it’s imperative to tell patients that this will happen and it is temporary. It will resolve and we will help you through it. They don’t know it’s fluid and it can be a huge trigger for their relapse” (Ann Goebel-Fabbri, PhD).
What are other factors in recovery?
“In my research I learned that the patients who stopped insulin restriction had changed the way they thought about insulin. Their emotional response to requiring insulin had changed. They no longer feared it would result in weight gain, and in fact did not gain any weight.
“It’s so important to show people that people can and do recover. With eating disorders there’s a lot of pessimism with the possibility of recovery and especially in the Type 1 world. I talk about the need for hope and for hope that’s grounded in reality” (Ann Goebel-Fabbri, PhD).