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Insulin gives people with type 1 diabetes the ability to survive, but it’s not without its risks. One of those risks is diabulimia, a mental health condition that leads to disordered eating.

Diabulimia is a serious eating disorder that impacts those with T1D specifically. It happens when someone purposely reduces or stops taking their needed insulin in order to lose weight.

Diabulimia is an eating disorder that affects people who use insulin. A person with diabulimia deliberately limits or avoids taking insulin and engages in disordered eating so that they can lose weight or avoid gaining it.

The term — which combines the words diabetes and bulimia — came into use around the early to mid-2000s. But the issue itself has been observed by diabetes professionals for decades. In fact, the esteemed diabetes behavioral expert Dr. William Polonsky wrote one of the most pivotal articles on the topic back in 1994.

As recently as 2019, health experts have described it as “the world’s most dangerous eating disorder.”

Beyond being concerned about weight gain, there are several other factors or triggers that can drive this behavior:

  • difficulty coping with diabetes and its daily demands
  • past trauma and difficult relationships
  • a need to be in control, especially in control of the body and how it functions

People assigned female at birth are more often affected.

The National Eating Disorders Association (NEDA) has reported extensively on diabulimia and reviewed clinical research from the early 1990s to present. The organization’s findings include the following:

  • 30% to 35% of women with diabetes have restricted insulin in order to lose weight.
  • 1 in 6 men with diabetes experience diabulimia.
  • Adolescent women with T1D are 2.4 times more likely to have a diagnosable eating disorder and 1.9 times more likely to have a sub-threshold eating disorder.

Most studies have focused on T1D, but one 2016 case study (plus anecdotal evidence) has suggested that the same prevalence and risk exists in anyone with insulin dependence, including those with type 2 diabetes and LADA (latent autoimmune diabetes of adults).

While insulin is essential to a person with diabetes, someone with diabulimia may view taking insulin negatively.

A common side effect of taking insulin is weight gain. Someone with diabulimia may think that they should avoid taking insulin so as not to become “fat.”

This type of thinking can cause someone to drastically restrict their diet or avoid taking insulin altogether. They may try to lower their glucose levels in other ways, such as through exercising or purging.

As with other eating disorders, diabulimia often presents itself with a range of emotional, behavioral, and physical symptoms. Symptoms of eating disorders in general may include:

  • focusing intently on one’s appearance, weight, and food in general
  • being preoccupied with calories, carbohydrates, fat, and dieting
  • seeking “perfect” control of one’s body and behavior
  • imposing diet restrictions on oneself, sometimes eliminating whole categories of foods that are seen as fattening, such as carbohydrates
  • exercising compulsively in order to use up the calories eaten
  • purging past meals with laxatives or forced vomiting
  • being socially and physically isolated

All of these behaviors are driven by a desire to remain in control and avoid gaining weight.

Symptoms specific to diabulimia include:

  • neglecting routine diabetes management (not refilling prescriptions, skipping scheduled labs, or avoiding doctor appointments)
  • being secretive about diabetes care and routine
  • believing or expressing the idea that insulin will make you “fat”
  • restricting eating in order to reduce the amount of insulin taken
  • having an A1C at 9.0% or higher on an ongoing basis
  • having an A1C that’s inconsistent with glucose level readings
  • having repeated episodes of or consistently getting close to diabetes ketoacidosis (DKA)

When left unaddressed, eating disorders can shorten one’s life. And withholding insulin brings its own risks for people with diabetes.

Most immediately, withholding or limiting insulin puts the person at risk of DKA. This is a potentially life threatening emergency that often requires hospitalization.

The following symptoms may also result from diabulimia:

  • stomach cramps and non-specific GI discomfort
  • difficulty concentrating
  • feeling faint or dizzy
  • erosion of tooth enamel
  • low thyroid, hormone, or potassium levels
  • low white or red blood cell counts
  • slow healing of wounds
  • irregular menstrual periods

These effects can appear in any combination. This is one of the things that makes diagnosing an eating disorder difficult. However, when any of these symptoms are present and persist, it may indicate that the person has diabulimia.

Over time, the lack of insulin drives diabetes complications by keeping glucose levels high. These complications can include:

How to find help from a medical professional

Diabulimia is a serious mental health disorder that requires treatment that integrates services from psychology, nutrition, and endocrinology practices.

In the best-case scenario, each specialist has knowledge of both diabetes and eating disorders so that they understand the particular challenges that come with addressing both.

With diabulimia, as with any eating disorder, the earlier treatment begins, the more likely there will be a positive outcome. The best time to seek medical help is when symptoms first become apparent.

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The personal stories of people who have experienced diabulimia reveal the profound impact that the condition can have on health and quality of life. But these stories also provide proof and hope that recovery from diabulimia is possible.

There are common themes in many personal stories of diabulimia:

  • People with the condition often feel that they have a “weird” relationship with food.
  • They feel pressured to keep their numbers in range, whether it’s their weight or glucose levels.
  • They often feel judged, especially by medical professionals, when they miss their targets.
  • They feel that they must “control” their diabetes, even though this is impossible — it can only be managed.

One of these stories comes from Asha Brown, founder of the nonprofit organization We Are Diabetes. Diagnosed with T1D when she was 5 years old, Asha shares that she was in college when she started experiencing diabulimia.

Soon, maintaining a healthy size and weight felt like her full-time job. It took years for her to seek the help she needed.

Brown admits that entering recovery can be scary, as it requires you to give up some sense of control. For most people with an eating disorder, the desire for complete control drives their behaviors and relationship with food.

Letting go is often the hardest step in recovery. But Brown says that it was ultimately one of the best decisions she ever made.

Here are some resources that may help someone deal with diabulimia.

The Diabulimia Helpline

This hotline is available 24/7 at (425) 985-3635. They provide referral services to treatment centers, doctors, and therapists who have experience and expertise in both psychology and diabetes.

Aside from that direct telephone helpline, there are also other resources such as an online support group forum, “recovery poetry,” and personal stories of those who’ve dealt with diabulimia.

You can also post your own story online as a way to share your own experience and connect with others in the diabetes community.

We Are Diabetes

This organization was founded in 2011 by the above-introduced Asha Brown. The group is a leading source of information and help for those in the diabetes community living with diabulimia.

The group offers a free online recovery toolkit and works with diabulimia-knowledgeable healthcare professionals across the United States. They provide referral and support group services, including a mentorship program and a variety of books and specialized guides on the topic.

National Eating Disorders Association (NEDA)

As the largest national nonprofit organization focused on eating disorders, NEDA has been around since 2001. This group has their own helpline at (800) 931-2237. They also provide online resources and an eating disorder screening tool, among many other tools.

Diabulimia is an eating disorder that affects people with diabetes. It causes people to avoid insulin, restrict their diet, or exercise excessively to avoid weight gain. While it can be life-altering, there’s effective treatment, and recovery is possible.