Conversations around eating disorders often center on conditions like anorexia and bulimia, but disordered eating can take many forms. We wouldn’t be surprised, for instance, if you’ve never heard of diabulimia, a colloquial term used to describe a type of disordered eating specific to people with diabetes (typically type 1). Like other forms of disordered eating, this term refers to a complex array of symptoms and behaviors that can cause serious mental and physical health effects. Here’s what to know about the condition, including what kind of treatment can help.
What is diabulimia?
Due to its name, you might think a person with diabulimia has diabetes and bulimia. But this term specifically refers to people with diabetes (typically type 1 diabetes) purposefully restricting their doses of insulin and, as a result “purging” calories through their urine, Rita Kalyani, M.D., M.H.S., associate professor of medicine in the division of endocrinology, diabetes, and metabolism at the John Hopkins University School of Medicine, tells SELF.
To understand how this works, you may need a primer on the importance of insulin. Insulin is a hormone that helps to keep your blood sugar levels stable by allowing the body’s cells to absorb glucose (sugar you use for energy) from the food you eat. If you’re not producing enough insulin or it’s not being used effectively, that glucose can build up in the bloodstream and lead to high blood sugar. People with type 1 diabetes have little or no ability to produce their own insulin and properly process the sugar in their bodies, according to the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Some of this excess glucose spills into their blood—resulting in high blood sugar (hyperglycemia)—and also into their urine, resulting in lost calories. This is why some of the first signs of type 1 diabetes are weight loss and excess urination, per the NIDDK.
To counter these effects, people with type 1 diabetes must take a lifesaving and lifelong regimen of insulin via injection or pump every day, according to the NIDDK. (Insulin therapy is only necessary sometimes with type 2 diabetes, which is why we’ll focus on type 1 diabetes.)
When someone with type 1 diabetes starts taking insulin, regaining any lost weight is a sign that this insulin therapy is working. “The body can finally start to use the glucose in the blood as an energy source again, and [the person with type 1 diabetes is] no longer urinating out those calories,” Dr. Kalyani explains. It can also be normal to gain “a bit” more weight on top of that, Dr. Kalyani says, explaining that the amount of weight a person gains depends on individual factors like their insulin dose.
When people purposefully restrict their insulin therapy so they can “purge” calories to lose weight, it’s often called diabulimia. We say “often called” because there’s some debate surrounding this moniker. Diabulimia is not a clinical term, Mary de Groot, Ph.D., associate professor of medicine and acting director of the Diabetes Translational Research Center at Indiana University, tells SELF. In fact, some experts don’t like the word diabulimia at all.
For some people, it’s a reductionist and misleading label because it does not reflect the wide array of disordered eating experiences people with type 1 diabetes can have, clinical psychologist Ann Goebel-Fabbri, Ph.D., author of Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope, tells SELF. Insulin restriction doesn’t always present on its own. If it happens with bingeing and self-induced vomiting (or other actions like excessive exercise), it can fit into a diagnosis of bulimia. When coupled with severe food restriction, it may be diagnosed as anorexia. Diabulimia can also be diagnosed as Other Specified Feeding and Eating Disorder (OSFED), a catch-all term used to describe an eating disorder that does not meet the diagnostic criteria of any one condition.
At the same time, having a name for insulin restriction as a disordered eating behavior can help people feel less alone in their struggle and make it easier to discuss, says Goebel-Fabbri. This may be part of why various organizations including the National Eating Disorder Association (NEDA), the American Diabetes Association (ADA), and the Juvenile Diabetes Research Fund (JDRF) do use diabulimia in their materials.
Still, experts like de Groot increasingly prefer using the umbrella term Eating Disorder-Diabetes Mellitus Type 1 (or ED-DMT1) to encompass any eating disorder in someone with type 1 diabetes, according to NEDA. “It covers the whole spectrum,” de Groot, who is also ADA president-elect of Health Care and Education, tells SELF.
The unique link between type 1 diabetes and disordered eating
Research indicates that those with type 1 diabetes may be more vulnerable to disordered eating behaviors than those without this condition.
To be clear, eating disorders are the result of a nuanced interaction of factors experts are still working to fully understand, according to the National Institute for Mental Health (NIMH). But there are risk factors specific to diabetes, de Groot says. One is the potentially overwhelming focus on food.
“Diabetes care requires a different kind of relationship to food than people without diabetes usually have,” de Groot says. It is usually difficult for people with diabetes to base their food choices solely on conventional hunger cues and desires because they sometimes have to use food to help manage their blood sugar levels, de Groot explains. (For example, consuming carbs to recover from low blood sugar even when you’re not hungry, or forgoing carbs when you want them but your blood sugar is high.)
“People may feel they have to approach food in a rigid way in order to manage their diabetes well,” Goebel-Fabbri explains. “And starting any kind of rigid diet is a primary [risk factor] for developing an eating disorder.”
Feeling like you need to pay constant attention to what you eat can become exhausting, Deborah Butler, certified diabetes educator (C.D.E.), director of behavioral health at the Joslin Diabetes Center, and part-time lecturer in the department of psychiatry at Harvard Medical School, tells SELF. Other people’s comments can compound this. People with type 1 diabetes often experience a lot of external attention on their eating habits, Butler says. This is usually not just from doctors, but also family members, friends, and partners, and it can contribute to an intense focus on food.
A desire for control is another potential factor. Managing any chronic illness can be emotionally and mentally draining. In type 1 diabetes, the seemingly never-ending quest for control can leave people feeling burnt out. “There’s so much importance placed on control and numbers—A1C, blood glucose values, time spent in the target [blood glucose] range, carb counting, weight—all these things that can make a person feel like they’re failing at managing their diabetes,” Goebel-Fabbri explains.
This can be even more difficult because many factors that can affect blood sugar are often outside the person’s control, Goebel-Fabbri says—including stress, illness, medications, and daily hormone fluctuations. This may make some people exert control however they can, including over their weight by restricting insulin. This is especially true for young women.
Even though anyone can have an eating disorder, young women are generally most at risk. Diabulimia is no exception. A 2013 Norwegian survey published in the journal Diabetes Care is one of the largest studies on diabulimia. It looked at the prevalence of a range of disordered eating behaviors in 770 people aged 11 to 19 with type 1 diabetes.
The study authors found that 36.8 percent of female respondents reported restricting their insulin at least occasionally after feeling like they’d overeaten. Just over 26 percent reported skipping insulin doses altogether. This is compared to 9.4 percent and 4.5 percent of male respondents, respectively. As the researchers note, other studies have consistently found similar rates of insulin restriction as disordered eating among young women, hovering around one-third.
The survey also found that the prevalence of insulin restriction and other disordered-eating behaviors (DEBs) increased dramatically with weight, especially among women. The rate of self-reported DEBs, including insulin restriction, was 53 percent among women whose weight was classified as obese.
Knowing the signs of diabulimia
According to NEDA, many emotional and behavioral symptoms of diabulimia have to do with food, weight, and general mental health. Here are some examples:
A distorted body image
Restricting certain foods or groups or instituting strict food rules
Preoccupation with food and weight
Avoiding eating around other people
Unexplained weight loss
But there are also some behavioral and physical symptoms that are more specific to diabulimia:
Secrecy or neglect surrounding diabetes management
Fears that using insulin will cause weight gain
Discomfort with testing blood sugar or injecting insulin in front of other people
Frequent nausea and/or vomiting
Extreme thirst and frequent urination
An A1c test result over 9.0 (signifying that average blood glucose level over the past three months has been abnormally high)
If a person with type 1 diabetes has bulimia, anorexia, or binge eating disorder, they will exhibit signs and symptoms specific to those EDs, too.
These signs might seem obvious, but diabulimia often presents a complex diagnostic challenge for doctors. Patients are typically reluctant to discuss restricting insulin for weight loss, Dr. Kalyani explains. And specialists don’t necessarily have the level of awareness needed to diagnose diabulimia. (Some endocrinologists, like Dr. Kalyani, will seek input from colleagues with expertise in eating disorders to help with a diagnosis if they’re concerned, but not all do this.)
Even if it’s established that someone is purposely not taking enough insulin, there are many possible reasons besides weight manipulation, Goebel-Fabbri says, like rationing insulin because of how expensive it can be, a fear of hypoglycemia (low blood sugar, which can be caused by taking too much insulin), or being embarrassed about taking insulin in public.
The dangers of diabulimia
Any time someone who relies on insulin therapy does not get the necessary insulin, it can put them at risk of high blood sugar. “Even moderate insulin dose changes can lead to symptoms such as blurry vision, fatigue, and frequent urination, especially if diabetes was not well managed beforehand,” Dr. Kalyani says. “Usually, the severity of symptoms [is] greater with more dramatic insulin dose changes.”
In the short term, extremely high blood sugar can cause slow wound healing, frequent staph or yeast infections, muscle atrophy, and severe dehydration, according to NEDA. In severe cases, it can also lead to potentially fatal complications like diabetic ketoacidosis (DKA), which occurs when the body starts rapidly breaking down fats for fuel because it can’t use glucose, according to the U.S. National Library of Medicine. This process produces large amounts of ketones, which are acids that can build up to toxic levels in the blood and urine, leading to diabetic coma or death.
Beyond that, all the severe long-term complications that can happen in anyone with poorly managed diabetes can appear more rapidly in people with diabulimia, per NEDA. These include heart disease, stroke, kidney disease, nerve damage, vision loss, foot problems, and more, according to the NIDDK.
Getting treatment for diabulimia can help ward off these issues and allow someone with diabetes to live a healthier, fuller life. Treatment is complex, though. Since proper treatment entails expertise in diabetes, nutrition, and behavioral health, a diabulimia caregiving team could include experts like an endocrinologist, certified diabetes educator (C.D.E.) or nurse educator, a registered dietitian, and a clinical psychologist or psychiatrist, Butler says. “You have to find a team of people that are knowledgeable about eating disorders on top of diabetes,” Butler says, which isn’t always easy. If you or a loved one has diabulimia, NEDA recommends reaching out to the Diabulimia Helpline at (425) 985-3635 and can point you to specific resources in your area. You can also contact NEDA’s helpline at (800) 931-2237.
The treatment plan for diabulimia varies on a case-by-case basis, but it generally involves a medical intervention—including any necessary emergency care—and helping the person stabilize their blood sugar levels, Dr. Kalyani says. Then the behavioral component involves a therapist so the person with diabulimia can explore and repair their relationship with body image, food, and diabetes itself, de Groot says.
In recovery, the emphasis is on progress, not perfection. “It’s about the medical team and the mental health team being in communication and gradually working with the patient on achieving small, realistic, goals,” Butler says. “The person doesn't have to feel alone with this struggle,” de Groot adds. “People can feel better.”