What is Diabulimia?

The term diabulimia (medically classified as as ED-DMT1) describes the life-threatening practice of withholding insulin to manipulate or lose body weight when living with an insulin dependent form of diabetes, like type 1 diabetes (T1D). People struggling with diabulimia may exhibit a wide variety of disordered eating behaviors or they may only manipulate their insulin and otherwise have normal eating patterns.

While there is limited research on men and nonbinary people’s experience with diabulimia, women with T1D are two and a half times more likely to develop an eating disorder than their non-diabetic peers, according to Marilyn Ritholz, PhD, senior psychologist at Joslin Center for Diabetes and Ann Goebel-Fabbri, PhD, a licensed psychologist who worked at Joslin for 16 years.

Before we dive into diabulimia, let’s get acquainted with the major types of disordered eating.

What is anorexia nervosa?

Anorexia nervosa 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, i.e. vomiting or throwing up. 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.

What are warning signs of diabulimia?

• Rapid weight loss with normal or heavy eating
• A high A1C
• Physical exhaustion
• Increased appetite
• Mood changes
• Decreased concentration and motivation
• Repeated cases of diabetic ketoacidosis (DKA), which can be life-threatening

“It really is all the symptoms found in early diabetes diagnosis,” says Ann Goebel-Fabbri, PhD.

“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.

How do you know if you are at risk for diabulimia?

If you notice yourself lowering your regular insulin dose and it’s not because of concerns around cost, pause. You may be doing this out of habit based on some misinformation around insulin leading to weight gain. You’re not alone—according to Dr. Goebel-Fabbri, up to 30 percent of women with T1D have restricted insulin in some way.

If you find yourself regularly not giving yourself the amount of insulin your body needs to stay within a healthy blood glucose range, you may have heard that taking insulin can cause you to gain weight. But that’s not the whole story.

When you first start taking insulin after a diagnosis, you may gain some weight, but that’s a good sign! It means your body is finally getting the fuel it needs from the sugar in your bloodstream. This is normal.

Over time, you may notice fluctuations in your weight, lower or higher. This does not mean that insulin is the reason. Insulin is one vital hormone of several that are not made or used properly in someone with diabetes.

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 T1D to the clinical picture and they are still more dangerous. [People with diabulimia] have higher rates of diabetes complications earlier in their disease.”

Treating diabulimia

“Traditional [eating disorder] 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.” says Ann Goebel-Fabbri, PhD. “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.”

For someone dealing with diabulimia, experts recommend:

• work with a healthcare provider (HCP) who specifically treats diabetes and/or diabetes-related eating disorders, as treatment will be different than for someone without diabetes.
• take it a step at a time. If you realize you are dealing with diabulimia, you may feel the urge to make a fast change, alone. But bringing down your glucose numbers too quickly when they have been elevated for some time can also have negative impacts. Work with your HCP on a gradual approach.
• talk with your healthcare provider about your concerns. Managing weight can be difficult when also managing blood glucose levels, but newer medications, technologies and approaches can help you tackle weight concerns while staying healthy.
• consider meeting with a HCP frequently, especially to start. Whether that’s a certified diabetes care and education specialist (CDCES), endocrinologist or other healthcare provider, you deserve support.
• reach out to your diabetes care team for extra support. When you are dealing with diabulimia, your body may be experiencing other things, like not getting enough nutrients. Make sure your entire care team knows what you are managing.
• find a therapist who understands chronic illness. “Recovery depends on developing an improved sense of self,” says Dr. Goebel-Fabbri. It is important that someone can give you space for all of the emotions—anger, sadness, despair, frustration, loneliness—that can come up with diabetes. Dr. Goebel-Fabbri continues, “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.”

You’re not dealing with diabulimia alone

Many people with diabetes have dealt with diabulimia or symptoms of diabulimia. It does not mean you’re failing—it means you are doing a hard thing.

To find other people who may share your experiences, spend some time on the Beyond Type 1 community app, a protected community where you can be vulnerable and share tips about living with type 1 diabetes.

You can also read more about what to expect during diabulimia recovery.