Diabulimia is the non-clinical term for those with type 1 diabetes who manipulate their use of life-sustaining insulin in the interest of losing weight or out of fear of gaining weight. This dangerous maneuver would be characterized as an “eating disorder not otherwise specified” in the DSM-5.
What Is Diabulimia?
Diabulimia is a dangerous combination of a chronic medical illness combined with an eating disorder. About one-third of type 1 diabetics will be afflicted with diabulimia.2, 5, 7 Those with type 1 diabetes will either omit their insulin all together, reduce their insulin intake, or overdose on insulin to offset a carbohydrate binge.7 This can lead to dangerous and severe medical complications.
Those struggling with diabulimia tend to prioritize weight loss and their fear of weight gain so much that they’ll deny these real and dangerous consequences. Diabulimia is described by some as “too tempting” or the “perfect diet” since it is such an accessible way to lose weight that requires no dieting or exercise. In fact, diabulimics can eat in excess and still manage to lose weight, but this isn’t without heavy consequence.
Effects of Diabulimia
The most severe effects of diabulimia include blindness, stroke, or rapid death.
Other medical issues common to diabulimia include:2, 6
- Staph infection
- Muscle Atrophy from rapid weight loss
- Bone weakness
- Physical fatigue and weakness
- Migraines
- Poor eyesight and risk of blindness
- Neuropathy or nerve damage
- Stroke
- Loss of limbs
- Heart failure
- Infertility
- Amenorrhea
- Urinary tract infection (UTI)
- Liver disease
- Diabetic ketoacidosis, requiring hospitalization
- Diabetic coma, requiring emergency treatment
- Death
Signs of Diabulimia
Diabulimia, like most eating disorders, can present itself physically as well as mentally and emotionally. Because the episodes of insulin omission are often hidden, there may be some confusion to friends and family observing the individual becoming sicker, losing weight, or changing their personality and behavior.
Signs of diabulimia include:1, 2, 7
- Nausea
- Weight loss
- Susceptible to illness from weakened immune system
- Frequent urination
- Smell of ketones on breath and sweat
- Binging on carbs, but noticeable weight loss
- Not filling insulin prescriptions or finding excess bottles of insulin around
- Fainting, dizziness, less alert
- Mood swings
- Avoiding testing blood sugar or evasive about reporting blood sugar levels
- Irrational fear that taking insulin will make the individual gain weight
- Excessive hospitalizations from any range of medical issues
Symptoms of Diabulimia
For the individual struggling with diabulimia, the internal experience may be quite different from what is presented to others. Many symptoms will be physical, however, there’s a significant emotional component to the diabulimia that may go unseen.
Common symptoms of diabulimia include:1, 7
- Obsession with food and weight, prone to obsessive behaviors like sticking to dietary regulations
- Fear that taking insulin causes weight gain
- Feels societal, medical or familial pressure to be thin
- Feels validated by weight loss, seeks approval from others
- Has experienced emotional eating or bingeing
- Mood dysregulation, anxiety disorders, depression
- Low self-worth, guilt, or disgust over their disordered behavior
- Guilt around deceiving family, friends, and medical professionals
- Engages in denial to self and others about consequences of their diabulimia
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Causes & Risk Factors of Diabulimia
Those with diabulimia remain unique individuals with a shared diagnosis. Not every person will fit the criteria and the eating disorder isn’t always preventable. That said, research has shown some are more at risk than others. Of course, the primary risk is being diagnosed with type 1 diabetes. Prevention must start there since upwards of 30% of diabetics may manipulate their insulin with intentions to lose weight.
A diagnosis of diabetes type 1 often occurs in childhood or early teens, so from a young and impressionable age the patient is being taught to not only watch their weight and food intake, but to obsess over it.7 This alone predisposes a person to eating disorder, akin to excessive dieting or counting calories. Research also shows that women and LGBTQ+ individuals are more susceptible to diabulimia.7, 9
Causes and risk factors for diabulimia include:1, 2, 5, 6, 7, 9
- The diagnosis of type 1 diabetes on it’s own is a major risk factor with up to 40% developing diabulimia
- Perfectionism
- Medical doctor fixating on weight loss and exercise to manage diabetes and the patient’s resorting to insulin deprivation out of desperation to comply
- Being overweight, higher BMI
- Diabetes burnout, when one is tired of managing their disease
- Having a prior eating disorder
- Desire or social pressure to be thin
- Being age 15-30
- Being female
- Being LGBTQ+
Diagnosing Diabulimia
While there’s no formal diagnosis for diabulimia in the DSM-5, a medical professional would likely diagnose “other specified feeding or eating disorder.” A doctor or clinician can determine from there which sub-category it best fits (i.e., atypical anorexia, bulimia nervosa, binge-eating disorder, or purging disorder).
Insulin deprivation alone would be considered a purging disorder. If insulin flooding pairs with a binge episode, the eating disorder may be considered bulimia nervosa or binge-eating disorder. If there’s low body weight, significant weight loss, abstinence from food, and also insulin deprivation, this may better fit criteria for anorexia nervosa or atypical anorexia.
To be diagnosed with “other specified feeding or eating disorder,” the behavior must cause marked impairment in at least one area of functioning: social, occupational, and/or relational. The individual must also have type 1, insulin dependent diabetes.3
Diabulimia Tests, Quizzes, & Self-Assessment Tools
Only a licensed health or mental health professional can diagnose diabulimia. It is recommended that you schedule an appointment to speak with a doctor or licensed therapist if you are concerned about insulin abuse or your eating habits.
Tests Performed by Doctors
Comparing your symptoms to the criteria in the DSM-5 for “eating disorder not otherwise specified” is the most common and universal approach to diagnosis. There’s no universal screening test; however, your doctor or therapist may give you a questionnaire for research purposes. These may include the Eating Disorders Examination-Questionnaire (EDE-Q), Eating Attitudes Test (EAT), or the Eating Disorder Inventory (EDI).
Treatment of Diabulimia
Diabulimia treatment is usually intensive and costly due to the severity of this disorder. If the patient can not commit to using the minimum therapeutic dose of insulin daily in an outpatient setting, they will need to be treated at an eating disorder recovery center, inpatient rehabilitation, or inpatient hospitalization.6
Patients may step down to intensive day programs with groups and therapy daily, up to five days per week. The least intensive treatment option will be weekly or bi-weekly psychotherapy with a psychologist, social worker, or mental health counselor, ideally in conjunction with one’s medical doctor.
Whether inpatient or outpatient those with diabulimia need a full treatment team including an endocrinologist, RN, nutritionist, and mental health counselor. Recovery is difficult and will take intensive intervention with a team of professionals in addition to on-going mental health treatment. In one study up to 93% of participants still showed signs of diabulimia 5 years after onset.5
Here are forms of treatment for diabulimia:
- Harm reduction and contracting: the doctor or behavioral therapist will work with the patient to at least take a minimal dose of insulin consistently for a period of time, until they can agree to a full dose. This is only done if the benefit outweighs the risk and the patient would otherwise refuse all insulin management.
- CBT: cognitive behavioral therapy (CBT) deals with the idea that irrational, repressed thoughts trigger emotional responses, which trigger unwanted behaviors (e.g., poor insulin management). CBT is typically short-term, approximately 6-12 sessions. The goal is to confront irrational thoughts and uncover underlying emotional issues.4, 8
- Long-term psychoanalysis: psychoanalysis may be open-ended and can help uncover the root of the eating issues. Long-term therapy will be an important part of the recovery process as it is important to understand how these issues arose and possible solutions to underlying issues, including fear of weight gain, pressure to be thin, and pressure to gain approval.
- Recovery centers: eating disorder recovery centers can offer a fine-tuned and interdisciplinary approach to those struggling with diabulimia. This would include support groups, individual therapy, medication or psychiatric assessment, and a nutritionist on-hand. This may be a good option for the individual looking for a very in-depth, tailored, and focused experience of recovery.
- Inpatient rehab: individuals may find themselves in need of urgent and intensive medical and psychological intervention, especially if they continue to refuse the minimum dose of insulin.6 In this case the individual’s food and insulin will be heavily monitored by a medical team of nurses and doctors for a period of time long enough to stabilize the medical condition. The person may also receive intensive psychological attention with daily support groups and therapy sessions.
- Support groups: support groups like “Diabuddies” can be helpful. These are free online or in person groups where young people with diabetes type 1 can connect and offer each other understanding and encouragement.
Cost of Treatment
Cost of treatment can range from free to the tens of thousands, depending on the level of care you receive. Typically support groups are donation based or low cost. You can find support groups in your area through the Diabulimia Helpline or NEDA Support Groups.1, 6 The cost of a therapist and nutritionist would range from a small co-payment to $100-$200 per session.
Inpatient rehab, partial hospitalization, or intensive outpatient treatment will be indicated when the patient refuses to take a minimum therapeutic dose of insulin daily.6 These treatments can cost thousands of dollars even with medical insurance and are reserved for those whose addictive behaviors put them in life-threatening emergency situations.
Insurance may cover some or all of the associated costs. While the expense of treatment can be a deterrent, not getting treatment is costly as well, with sufferers experiencing blindness, loss of limbs, coma, or even fast death.
How to Get Help For Diabulimia
Diabulimia requires urgent intervention, yet may be difficult to diagnose and treat. Often one’s medical doctor responsible for helping the individual manage their type 1 diabetes is the first line of defense. As mentioned earlier, a medical doctor may overlook the underlying psychological issues around manipulating one’s insulin and write off the behavior as non-compliance.
A mental health professional may also overlook this behavior since it is not clearly outlined in the DSM. There is strong argument to add this diagnosis to the DSM as some patients have reported being turned away from treatment since diabulimia is not considered typical starving or purging behavior.11
Ideally, in either setting, the patient is being screened for other underlying emotional symptoms like anxiety, depression, and suicidal ideation, which can come with the stress of managing one’s diabetes. The patient’s PCP or endocrinologist should refer them to necessary mental health treatment.
How to Get Help For a Loved One With Diabulimia
Diabulimia is a dangerous eating disorder and if one is mismanaging their insulin, they may need emergency intervention. Mandated treatment is difficult for friends and family who may feel that they’re betraying their loved one. That is why it is only reserved for the most urgent life and death situations, which unfortunately diabulimia can easily become.
Here are ways you can help a loved one with diabulimia:
- Disclose information about this person’s condition to their endocrinologist right away
- Let them know you are there to support them and be open to listening13
- Inform yourself on signs and symptoms of diabulimia so you can answer questions they may have
- Don’t legitimize their dangerous relationship with insulin omission
- If the individual is ready to admit they have a problem, join them in their more rational thinking and motivate them to engage in treatment
- Lend a listening ear, help connect to treatment, and provide positive reinforcement and encouragement along the way
- Be aware of the possibilities of relapse and remain supportive as set-backs in the process are inevitable5
Diabulimia Statistics
Statistics can provide an overview of what is most common; however, not every person struggling with diabulimia will fit into all of these categories. While statistics highlight who is most at risk for diabulimia, the disorder can affect anyone diagnosed with type 1 diabetes.
Consider the following statistics about diabulimia:
- One-third of individuals with type 1 diabetes engage in diabulimia. Some research shows up to 40% but patients may be overlooked as “non-compliant” or rebellious 12
- Type 1 diabetics are 4 times more likely than non-diabetics to have eating disorders7
- Diabulimia is the most fatal of all eating disorders. Diabetics with diabulimia are three times more likely to die from their disease than type 1 diabetics alone7
- In one study 93% of individuals with diabulimia were still struggling with the eating disorder 5 years later. Others suggest a 53% chance of relapse.5
- Most (up to 75%) with diabulimia also engage in another form of eating disordered behavior, such as over-exercising, binging, or purging7
- Diabetes puts individuals at risk of developing eating disorders later in life. 60% of women with type 1 diabetes have eating disorder by age 25.5
- Approximately 30 million individuals world-wide including 8 million Americans have an eating disorder. 1 million men in America have an eating disorder.6, 12
- Suicide attempts are more common in individuals with an eating disorder. Some with diabulimia have expressed they would rather die of the disorder than gain weight associated with injecting insulin.7, 10
- Over 30% of women with type 1 diabetes between the ages of 15 and 30 engage in insulin omission to some degree10
- Studies show that people with type 1 diabetes are two and a half times more likely to develop an eating disorder5
- LGBTQ patients are more likely to develop an eating disorder. The ANAD reports that 16% of college-aged students have reported having an eating disorder; and in the same national study of college students, 3.5% sexual minority women and 2.1% of sexual minority men reported having an eating disorder.9
- Women are more likely than men to develop an eating disorder worldwide and in the US by about 8 times7, 12
- Insulin restriction is more common in individuals struggling with their mood, such as depression and anxiety (often around food). It is also a common compensatory behavior for guilt around poor food choices, such as making a dietary exception to eat sweets.7
- In one study, 75% of participants with co-morbid T1D and eating disorder used insulin omission alone, 19% used insulin omission with self-induced vomiting, and 6% used insulin omission with excessive exercise.7
Final Thoughts on Diabulimia
Diabulimia can be incredibly dangerous. If you or a loved one are dealing with this disorder, talk to your doctor about your options for treatment.
Diabulimia Infographics
