The term “diabulimia” was coined to refer to an eating disorder that occurs in someone who has diabetes, wherein the person intentionally restricts insulin in order to lose weight. Medical professionals term diabulimia as ED-DMT1, which stands for Eating Disorder – Diabetes Mellitus Type 1. This term is used to describe any type of eating disorder that co-occurs with diabetes type 1.
Most often, diabulimia refers to the practice of withholding insulin in order to lose weight, but it may also include unhealthy behaviors surrounding food or exercise, which often mimic the symptoms of anorexia nervosa or bulimia nervosa.
According to the American Diabetes Association, more than 30 million Americans (9.4 percent of the population) had diabetes in 2015.1 Around 1.5 million people are diagnosed with diabetes in the U.S. each year, and more than 325,000 people lose their lives each year due to complications related to diabetes.
Diabetes is characterized by high blood glucose or blood sugar levels. After you eat food, most of it is turned into glucose, which is the main source of energy for the body. In people who don’t have diabetes, blood glucose levels stay within a normal range, because insulin is released at the right time and in the proper amounts to help glucose enter the body’s cells. But in people with diabetes, blood glucose builds up in the body for a number of possible reasons:
- Not enough insulin is made in the body
- The liver releases too much glucose
- Cells are unable to utilize insulin properly
Type 1 Diabetes
Type 1 diabetes is characterized by the inability of the body to make insulin, and insulin is the cornerstone of treatment. Around five percent of people with diabetes have type 1, and most are under the age of 20 when they’re diagnosed.
Type 2 Diabetes
Type 2 diabetes is characterized by insulin resistance, or the inability of the cells to use insulin optimally. Over time, the ability of the pancreas to make insulin decreases. Most people with diabetes have type 2, and most are over the age of 40 during diagnosis.
Known as hyperglycemia, too much glucose in the blood can cause a range of complications, such as:
- Kidney disease
- Nerve damage
- Heart attack
The Most Common Eating Disorders
People with diabulimia may only manipulate their insulin to lose pounds or manage their weight, or they may engage in a number of disordered eating habits as well. These typically involve behaviors associated with anorexia nervosa or bulimia nervosa, two of the most common eating disorders.
Bulimia nervosa is typically characterized by periods of excessive overeating or bingeing, followed by purging behaviors such as vomiting or taking laxatives in order to lose weight or manage their current weight. Some people with bulimia are overweight or obese, but many maintain a normal weight. Regardless, most people with bulimia are preoccupied with their weight or body shape and judge themselves harshly for perceived flaws.
Anorexia nervosa is characterized by a very low body weight, a distorted body perception, and an intense fear of gaining weight. People with anorexia typically severely restrict their food intake and may use vomiting or laxatives to control calories. Some may exercise excessively to lose weight or keep it off.
What Causes Diabulimia?
Like most eating disorders, diabulimia begins with low self-esteem, poor body image, and concern about body weight.
Women who have type 1 diabetes are at two and a half times the risk of developing an eating disorder, compared with women who don’t have the disease. Additionally, a review of studies shows that around 30 to 35 percent of women with type 1 diabetes restrict insulin to lose weight at some point in their life.2
Researchers believe that this high prevalence of diabulimia is partly due to the psychological challenges that come with managing a serious chronic disease, partly due to the weight gain that may be caused by insulin, and partly due to the heavy attention paid to food as treatment. Treating type 1 diabetes requires knowing carbohydrate amounts, and sometimes, it’s necessary to eat even if you’re not hungry. This tosses intuitive eating out the window and can make you feel like a slave to food. According to the National Eating Disorders Association, people who have diabetes are at a higher risk for emotional problems associated with eating disorders.3 One analysis found that having diabetes more than doubles the risk of having clinical depression.
In some cases, before being diagnosed with diabetes, individuals experience intense weight loss, followed by weight gain once treatment begins. For some, this weight gain becomes a major negative focus in life.
Symptoms of Diabulimia
Some of the symptoms of diabulimia are very similar to the early symptoms of diabetes. That’s because diabulimia essentially turns back the clock on the disease, since it’s not being adequately managed.
Physical warning signs of diabulimia include:
- Rapid weight loss despite heavy or normal eating
- A1C of 9.0 or higher on a continuous basis
- Fatigue and exhaustion
- Increased appetite
- Excessive thirst and urination
- Recurring diabetic ketoacidosis without any apparent cause
- Frequent bladder or yeast infections
- Dry hair and skin
- Irregular or no menstruation
Emotional signs and symptoms of diabulimia include:
- Fear of low blood sugar
- Extreme anxiety about body image
- Changes in mood
- Discomfort with eating in social situations
- Discomfort with testing or injecting in front of others
- Rigidity surrounding food or exercise rules
- Depression and anxiety
Behavioral signs and symptoms of diabulimia include:
- Increasing neglect of diabetes management
- Secrecy surrounding diabetes management
- Missing doctor’s appointments
- A belief that insulin makes you gain weight
- Extreme changes in diet
- Restricting certain foods to reduce insulin doses
- Excessive exercise
- Withdrawal from friends or family
Not everyone with diabulimia will exhibit all its signs and symptoms. Symptoms may range from mild to severe.
Short and Long Term Effects of Diabulimia
Diabulimia poses a serious risk to health. Unmanaged blood sugar levels combined with inadequate nutrition or dangerous purging behaviors can lead to severe consequences down the road.
Withholding insulin, the key characteristic of diabulimia, can quickly lead to diabetic ketoacidosis or DKA, a life-threatening problem that occurs when insulin levels in the body are so low that:
- Glucose can’t enter cells to be used as a source of fuel
- The liver makes extremely large amounts of glucose
- Fat in the body is broken down too quickly for the body to process
The liver breaks down fat into a fuel called ketones. When ketones are produced too quickly, they build up in the blood and urine, making the blood acidic. Symptoms of DKA include deep, rapid breathing, dry skin and mouth, frequent urination, extreme thirst, headache, muscle stiffness, and nausea and vomiting.
Treating diabetic ketoacidosis involves administering insulin to correct high blood sugar and replacing lost fluids. Untreated, DKA can lead to severe illness and death. Complications of DKA include kidney failure, cardiac arrest, and fluid buildup in the brain.
Short Term Effects
Other short-term consequences of diabulimia include:
- Slow wound healing, since elevated blood sugar causes poor circulation and damages small blood vessels
- Bacterial infections, since high blood sugar reduces the body’s defense against infection
- Yeast infections, since high blood sugar allows yeast in the body to overgrow
- Muscle atrophy, which occurs when the body can’t utilize fuel, cells begin to starve and the body begins to use muscle for fuel
- Severe dehydration due to frequent urination
- Electrolyte imbalance, which occurs when the kidneys extract sodium and potassium along with the sugar and ketones to expel through urine
Long Term Effects
Long-term complications of diabetes may occur in people with diabulimia due to frequent, high blood sugar levels.
Health complications due to diabetes can include:
- Retinopathy, which involves damage to the blood vessels of the retina, potentially causing blindness down the road
- Macular edema, or the swelling of the eyeball due to excessive fluid
- Nephropathy, a serious kidney complication that can lead to kidney failure
- Neuropathy, a type of nerve damage that causes pain and numbness in the affected area (usually the legs and feet), or problems with the digestive system, blood vessels, heart, or urinary tract
- Kidney disease, liver disease and heart disease
Eating disorders also have serious consequences on health and wellbeing, including:
- Depression and anxiety
- Suicidal thoughts and behaviors
- Problems with growth and development
- Social and relationship problems
- Substance abuse
- Problems with the body’s systems, including the cardiovascular, gastrointestinal, endocrine, and neurological systems
- Organ failure
Once diabulimia develops, treatment is frequently needed to address the underlying roots of the disorder.
Like all eating disorders, diabulimia is treatable, but its treatment differs from that of other eating disorders. Treatment for diabulimia must address both the eating disorder and diabetes. An eating disorder treatment program that focuses on disordered eating that co-occurs with diabetes offers the best chances of successful recovery.
Holistic Team Treatment
A team approach to treatment offers the best outcomes and will involve an endocrinologist, a diabetes educator, a registered dietician who has knowledge of both diabetes and eating disorders, a physician, and a mental health professional who specializes in eating disorders. High quality diabulimia treatment is holistic in nature, addressing issues of the body, mind and spirit for whole-person healing.
Traditional vs. Complimentary
Both traditional and complementary therapies are used in high-quality diabulimia treatment programs. Traditional therapies like cognitive behavioral therapy and family therapy help individuals address a range of issues and develop an arsenal of coping and life skills that will help them maintain good physical and mental health while successfully managing their diabetes. Complementary therapies such as art therapy, equine therapy or restorative yoga help improve self-awareness, self-esteem, and self-confidence.
Inpatient vs. Outpatient
Treatment may take place through an inpatient recovery program or an outpatient program. Care providers will administer a number of assessments to determine the best level of care to start. Inpatient treatment involves living at a residential center, while outpatient treatment involves living at home and attending programs at the center during the day. Outpatient treatment is ideal for people who are able to take insulin consistently, eat enough food, and avoid purging behaviors.
Individual vs. Group
Therapy takes place in individual and group settings. Individual therapy helps patients address unique issues, work through setbacks, celebrate successes, and find answers to their questions and concerns. Group therapy is highly effective for treating eating disorders and offers an additional layer of support. Psychoeducational classes take place in group settings and educate individuals about a range of issues surrounding diabulimia, including:
- Body image
- Mindful eating
- Intuitive eating
- Coping with co-occurring disorders
- Family relationships
- Long-term recovery
In addition to therapy, treatment may include medication prescribed to address a mental illness or manage a co-occurring physical illness.
Goals of Treatment
The overarching goal of diabulimia treatment is to normalize the use of insulin, restore healthy blood glucose levels, and help the patient achieve a healthy weight. The first phase of treatment is medical and psychiatric stabilization, which may involve hospitalization if the diabulimia is severe.
Once stable, patients participate in a structured curriculum of therapies that help them explore the underlying causes of the eating disorder and build the skills they need to stay in recovery from the eating disorder and manage their diabetes. Treatment plans for diabulimia are highly individualized, designed by care providers to address all of an individual’s complex needs and issues.
Through a variety of therapies, patients:
- Learn how to manage stress and anxiety
- Set boundaries
- Manage healthy relationships
- Develop the ability to be a mindful, intuitive eater
- Overcome a diet mentality
- Develop an understanding of how good nutrition helps fuel good health
- Develop self-confidence and greater self-awareness
- Foster motivation to change
Recovery from diabulimia is possible, but it largely depends on you. Here are some tips during treatment to get the most out of it and improve the chances of successful recovery:
Tips for Successful Recovery from Diabulimia
Honesty is essential for recovery, especially when meeting with your therapist or therapy group. Only by being completely honest with yourself and others is it possible to work through the complicated issues that underlie in an eating disorder.
Through treatment, you’ll work to identify cognitive distortions, which psychologists call “stinking thinking.” You’ll examine your beliefs about yourself, your relationships, and the world around you. Keep an open mind throughout this process, which is an important foundation of successful recovery.
Be Fully Engaged
Engage fully in your treatment plan. Keep your focus on recovery and stay rooted in the present moment where all the action is happening. Participate in group sessions, work hard in individual therapy, and be a good listener.
Once treatment is complete, an aftercare plan will help navigate the early weeks and months of solo recovery from diabulimia. The better the plan is followed, the better the chances of long-term recovery.
Even if your aftercare plan doesn’t include participating in a support group, a support network can make a huge difference in your recovery. Support groups provide a place where people understand and can relate to what you’re going through. They offer emotional and practical support and promote personal accountability. According to a study published in the journal Addictive Behaviors Reports, support groups improve chances of successful recovery by increasing a sense of purpose and helping with motivation for change. 4
Ask Your Family to Get Support
Living with diabulimia can take a toll on family members. It’s helpful for family members to join a support group for family members of people recovery from eating disorders. Support groups help family members better understand the healing process and how to maintain their own good mental health. It offers them a place to go for resources, answers, and support.
Practice Mindfulness Every Day
Mindfulness is another important foundation of recovery, and is frequently taught during treatment. Keep practicing mindfulness by meditating daily and checking in throughout the day to assess how you’re feeling. Keep a journal, even if you write just a few sentences a day.
Continue with Therapy
Therapy helps you sort through a wide range of issues that can contribute to diabulimia and lead to relapse once in recovery. Continuing with therapy gives the opportunity to delve deep and resolve a variety of physical, mental and spiritual issues for greater happiness and self-awareness.
Although diabulimia is more complex than other eating disorders, high-quality treatment works to help individuals restore health and wellness. A holistic treatment program will address all an individual’s needs and issues to pave the way for long-term success. If you have diabulimia, treatment can help you end disordered eating behaviors. It’s never too early or too late to get help. The sooner you seek help, the better your chances of full recovery.