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 Eating Disorder, Not Otherwise Specified in the DSM-5. Signs, Symptoms, and Treatment will be described in detail below.
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 As outlined below this can lead to dangerous and severe medical complications including rapid death.
Those struggling with Diabulimia tend to prioritize weight loss and their fear of weight gain so much that they will deny these very 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. Unfortunately this is not without heavy consequence, with most severe being blindness, stroke, or death.
A diagnosis of diabetes type 1 often occurs in childhood 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. Furthermore, onset is in childhood or early teens when one is impressionable, lacks sound judgment, impulse control, and may not have the skills or brain development yet to cope with such a life altering diagnosis.
The emotional response to managing the illness may present in the form of an eating disorder that is so easily accessible to them- their insulin. Research shows women, LGBTQ+ individuals, and youth are more susceptible to Diabulimia.7,9 In anticipation of an emotional response to this life changing diagnosis, adequate support, mental health intervention and prevention may be indicated.
Signs of Diabulimia: What It Looks Like
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 that someone you know is struggling with diabulimia include:1,2,7
- Nausea
- Weight loss
- Susceptible to illness from weakened immune system
- Frequent urination
- Smell of ketones on breath and sweat
- Bingeing on carbs, but noticeable weight loss
- Not filling insulin prescriptions or finding excess bottles of insulin around
- Fainting, Dizziness, less alert
- Mood Swings7
- 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, outlined below
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
- 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 bingeing7
- Mood dysregulation, anxiety, depression7
- Low self worth, guilt or disgust over their disordered behavior7
- Guilt around deceiving family, friends and medical professionals7
- Engages in denial to self and others about consequences of their diabulimia
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
- Stroke2
- Loss of limbs
- Heart Failure
- Infertility
- Amenorrhea
- UTI (Urinary Tract Infections)
- Liver Disease
- Diabetic Ketoacidosis, requiring hospitalization
- Diabetic Coma, requiring emergency treatment
- Death
Causes & Risk Factors of Diabulimia
Those with diabulimia remain unique individuals with a shared diagnosis. Not every person will fit the criteria below and the eating disorder is not always preventable. That said, research has shown some are more at risk than others. Of course the number one risk is being diagnosed with Type 1 Diabetes to begin with. Prevention must start there since upwards of 30% of diabetics may manipulate their insulin with intentions to lose weight.
Some causes and risk factors for Diabulimia include:
- The diagnosis of type 1 diabetes on it’s own is a major risk factor with up to 40% developing diabulimia1
In addition:
- Perfectionism1
- Medical Doctor fixating on weight loss and exercise to manage diabetes and the patient’s resorting to insulin deprivation out of desperation to comply1
- Being overweight, higher BMI5
- Diabetes burn out, when one is tired of managing their disease1
- Having a prior eating disorder6
- Desire or social pressure to be thin1
- Being age 15-302
- Being female7,9
- Being LGBTQ+9
Diagnosing Diabulimia
While there is no formal diagnosis for Diabulimia in the DSM-5, a medical professional would likely use the diagnosis “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 or binge-eating disorder.
If there is low body weight, significant weight loss, abstinence from food, and also insulin deprivation, this may better fit criteria for anorexia 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, relational and the individual must also have type 1, insulin dependent diabetes.3
Treatment of Diabulimia
Diabulimia is a serious and life-threatening eating disorder. At all times, a medical physician must be involved in ongoing care. 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.
Coming to therapy means making a weekly commitment to gain perspective by focusing on yourself. It means meeting with a professional who is trained and equipped to treat individuals with Diabulimia. The relationship with your therapist will provide an unbiased, open-minded space for you to explore anything on your mind that may be impacting your recovery. Therapy is not always easy and comfortable, but it will ideally provide the safest space possible for you to work through these challenging and uncomfortable feelings.
Common types of therapies for treating Diabulimia include:
Harm Reduction & Contracting
Harm reduction and contracting can be a helpful approach in Diabulimia. 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.
Cognitive Behavioral Therapy (CBT)
CBT deals with the idea that irrational, repressed thoughts trigger emotional responses (i.e. ) which trigger unwanted behaviors (poor insulin management). CBT is typically short-term approximately 6-12 sessions. The individual will meet with a CBT certified therapist to complete logs, workbooks and worksheets (often referred to as “homework”). The goal behind CBT is to confront irrational thoughts and uncover underlying emotional issues beneath the behavior.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 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
Diabulimia is dangerous enough that the individual 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.
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
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 heath 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 are 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.
How to Get Help for a Loved One
Diabulimia is a dangerous eating disorder and if one is mismanaging their insulin, they may need emergency intervention. Information about this person’s condition needs to be disclosed to their endocrinologist right away so help can be found. Mandated treatment is difficult for friends and family who may feel that they are betraying their loved one and that is why it is only reserved for the most urgent life and death situations, that unfortunately diabulimia can easily become.
The individual struggling with diabulimia may be defensive, guarded, or fervently attempting to conceal their issue.13 Let them know you are there to support them and be open to listening. Inform yourself on signs and symptoms of Diabulimia so you can answer questions they may have. Enabling their irrational thoughts about food and insulin deprivation can be tempting as a sign of support, but it’s important not to legitimize their dangerous relationship with insulin omission.
Sometimes there is a moment of clarity and the individual is ready to admit they have a problem.13 From there you are able to join them in their more rational thinking and motivate them to engage in treatment. You can lend a listening ear, help connect to treatment, and provide positive reinforcement and encouragement along the way.
Be aware of the possibilities of relapse along the way and remain a patient support as set backs in the process are inevitable. In fact with diabulimia relapse is more common than not.5 Being a support can be very challenging at this time when one fears for their loved one’s well being and wishes for recovery.
Education, encouragement and connection to the resources provided above is one part of the process while patience and understanding for your loved one’s own self-determination and choice is another. They will ultimately be able to decide which course of recovery to pursue and it may be a challenging path.
Diabulimia Statistics
Statistics can provide an overview of what is most common, however not every person struggling with Diabulimia will fit in to all of these categories. While statistics highlight who is most at risk for Diabulimia, the disorder can affect anyone diagnosed with Type 1 Diabetes. As you see from the top two statistics below, the diagnosis of Type 1 Diabetes alone puts individuals at a great risk for developing this disorder.
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 rebellious1,2
- 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 relapse5
- Most (up to 75%) with Diabulimia also engage in another form of eating disordered behavior, such as over-exercising, bingeing 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 255
- Approximately 30 million individuals world-wide including 8 million Americans have an eating disorder. 1 million men in America have an eating disorder6,12
- 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 insulin7,10
- Over 30 percent of women with type 1diabetes between the ages of 15 and 30 engage in insulin omission to some degree
- 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 disorder9
- 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 sweets7
- 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 exercise7
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
Your doctor or therapist may give you a questionnaire to help determine a diagnosis, like the Eating Disorders Examination-Questionnaire (EDE-Q), Eating Attitudes Test (EAT) or the Eating Disorder Inventory (EDI). There is no universal screening test and most often these are used for research purposes. 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.
Quizzes & Self Diagnosis
This quiz can be used to determine if you have diabulimia, however, make sure to consult with a health or mental health professional before pursuing official diagnosis or treatment.
Additional Resources for Diabulimia
The following are helpful additional resources for anyone impacted by diabulimia:
