This article was designed to avoid triggering disordered eating behaviors in readers. It’s intended to be a safe place to read about and think about your own relationship with diabulimia and your own path to recovery.
While a person with diabetes can engage in disordered eating behaviors like anorexia and bulimia, there’s an eating disorder that pertains just to those with type 1 diabetes: diabulimia.
Extremely dangerous, this ineffective effort to lose weight can quickly lead to life-threatening diabetic ketoacidosis (DKA), a fast road to complications like retinopathy and gastroparesis, and interfere with every other part of living a full life.
In this article, we’ll look at diabulimia, the signs, and symptoms in a loved one, the risks and complications, the path to recovery, and available resources for those struggling with diabulimia.
For more on recovery from diabulimia, read “Diabulimia: 3 Patients Share Their Path to Recovery.”
What is diabulimia or “ED-DMT1”?
“Most people are familiar with the more widely known eating disorders anorexia nervosa, bulimia nervosa, and even binge eating disorder, but few recognize the link between type 1 diabetes and eating disorders,” explains We Are Diabetes (WAD) — a non-profit dedicated to supporting people with type 1 diabetes who are struggling with eating disorders.
“The term ‘diabulimia’ (also known as ED-DMT1 in the professional community) has often been used to refer to this life-threatening combination and the unhealthy practice of withholding insulin to manipulate or lose weight,” explains Asha Brown, founder of WAD, who recovered from her own battle with diabulimia and now mentors others.
“People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin and otherwise have normal eating patterns.”
WAD explains that engaging in ED-DMT1 behavior consists of taking only just enough insulin to function which results in dangerously high blood sugar levels — and actually isn’t very effective for true weight loss at all.
Instead, the immediate consequences are the result of dangerously high levels of ketones in the bloodstream, which leaves you feeling severely dehydrated, fatigued, irritable, and generally ill.
Just like the high ketone levels or DKA you probably experienced prior to your type 1 diabetes diagnosis, you’re exhibiting the symptoms of a body that isn’t getting enough insulin to function properly.
Common signs of diabulimia or “ED-DMT1”
The following behaviors are signs that a person with type 1 diabetes might be struggling with an eating disorder, according to We Are Diabetes:
- Changes in eating habits
- Rapid weight loss or weight gain
- Low self-esteem or preoccupation with body image, weight or food intake
- Frequent urination, excessive thirst or high blood sugar levels
- Low energy, fatigue, shakiness, irritability, confusion, anxiety, or even fainting
- Purging behaviors (such as vomiting, excessive exercise or the use of laxatives)
- Discomfort with eating or taking insulin in front of other people
- Unwillingness to follow through with medical appointments
- Recurring diabetic ketoacidosis (DKA)
*For signs and symptoms of traditional eating disorders like anorexia and bulimia, visit this list from the National Eating Disorders Organization.
Diabulimia isn’t always obvious
“People are strangely capable of walking around and dealing with everyday life at a relatively ketotic state,” explains Ann Goebel-Fabbri, PhD, and author of Prevention and Recovery From Eating Disorders in Type 1 Diabetes: Injecting Hope.
Goebel-Fabbri says the same can be true of patients engaging in traditional eating disorders like severe anorexia. Despite being in a state of severe starvation, some are still able to keep up with the demands of their career or their college courses, for example.
“I’ve seen patients with A1cs as high as 14 or 15 percent still achieving straight-As at Harvard,” says Goebel-Fabbri. “But they are working intensely harder than if they were taking adequate insulin.”
She adds that many of her patients may not show visible signs of a severe eating disorder but due to dangerously high blood sugar levels, they are still in medical danger.
“It can be hard to identify. You don’t always see, for example, massive weight loss like you would in traditional anorexia. But the level of dangerousness that’s going on inside a patient’s body happens much earlier in the process of diabulimia than anorexia.”
Why diabulimia doesn’t actually lead to successful weight-loss
“Your eating disorder is lying to you,” says Asha Brown. And when it comes to a fear of taking your insulin, this couldn’t be truer.
Over the course of 11 years, Goebel-Fabbri and her colleague Katie Weinger, M.D., studied a group of participants – some who did and some who did not describe restricting insulin.
In the beginning, insulin restrictors believed that taking appropriate amounts of insulin would lead to weight gain, and that “insulin makes me fat.”
But the exact opposite was apparent when comparing the patients who were still engaged in diabulimia behaviors to those who were in recovery by year 11.
“Their belief that taking insulin would make them fat did not pan out,” says Goebel-Fabbri. “If you compare those two groups, the ones who were still practicing diabulimia actually had a higher weight than the women who were in recovery and taking their insulin properly.”
When you’re skipping insulin and running your sugars high, says Goebel-Fabbri, your body is in such a severe state of starvation that it leads to weight gain in two ways:
- Your eating gets more and more out of control — with frequent binge-eating episodes.
- And your body clings to every single calorie and ounce of fat because it knows it is in a severely starved state.
The patients who focus on recovery and begin taking their insulin properly have been able to realize and accept that all humans need insulin and food in order to thrive — and that taking insulin while maintaining a healthy weight is possible.
How to approach a loved one who might be struggling with diabulimia
Let’s start with what not to do: accusing your loved one of skipping their insulin.
Instead, Goebel-Fabbri recommends shaping a conversation with someone who may be engaging in diabulimia behaviors around these 5 steps:
- Start with an open-ended conversation, rather than accusing them of skipping their insulin.
- Say something like, “I see that your A1c keeps getting higher…and your energy seems so low lately…and I’m really worried about you. I love you. How can I help?”
- Be aware that eating disorders affect women and men.
- Keep in mind that there are other reasons someone might be rationing their insulin, including: fear of hypoglycemia (low blood sugar), inability to afford insulin, general diabetes burnout, or rebelling against the disease and its overwhelming list of responsibilities.
- Remember that you cannot force someone into recovery — it has to be their own choice.
Approach your loved one with…love, love love. Sincere concern. And the open-ended offer to support them in their own steps towards recovery.
“It’s on the shoulders of the loved ones and healthcare team to not have a knee-jerk reaction,” says Goebel-Fabbri, “but to look deeper and create a conversation that isn’t about blaming or accusing. Instead, focus the discussion on expressing your concern for someone you sincerely care about.”
Pursuing recovery: can it be done without professional help?
Unfortunately, while there are many treatment programs for eating disorders in general, very few of these programs have the training or understanding to fully support a person with type 1 diabetes facing diabulimia.
But treatment — whether it’s a full inpatient program or regular appointments with a mental health professional — isn’t always affordable.
“We know in the mental health field that people can overcome mental health issues without professional treatment, but we don’t know who those people are because we don’t see them,” explains Goebel-Fabbri.
Inevitably, overcoming an eating disorder like diabulimia is going to be much harder on your own than with inpatient or outpatient treatment support.
In Goebel-Fabbri’s recent book, she interviewed 25 women who had recovered from diabulimia, only 1 of them achieved recovery without professional support. The others sought support from varying combinations of treatment centers and therapy. And in some cases, patients might work with a professional for a period of time and then continue their pursuit of recovery on their own.
The breaking point: what people in recovery all have in common
“I just got sick of being so sick.”
This sentiment, says Goebel-Fabbri, is what she hears most from patients who pursued recovery from diabulimia and other disordered eating behavior.
“When I asked these patients what they really meant by ‘sick of being so sick,’ they each said there was a certain point at which they realized how much diabulimia was interfering with everything else they wanted in their lives and what they valued.”
At some point, diabulimia will impact your daily life in a way that prevents you from having or achieving the things and goals you value most.
Goebel-Fabbri said patients’ different breaking points were when their eating disorder began to interfere with things like: romantic relationships, sports achievements in school, the progression of their career, their friendships, wanting to get pregnant and become a parent or losing a partner as a direct result of their eating disorder.
In Asha Brown’s story of recovery, she echoes the same type of breaking point. She wasn’t showing up to rehearsals for a professional theater production due to extremely high blood sugar levels and was eventually fired.
Another breaking point for some patients, says Goebel-Fabbri, is the diagnosis of their first diabetes-related complication due to constant high blood sugar levels.
A study published in the New England Journal of Medicine reports that within 4 years of practicing eating disorder behavior and insulin omission, 86 percent of participants with “highly disordered eating behavior” had developed varying degrees of retinopathy and other diabetes-related eye complications compared to only 24 percent in the group without disordered eating behavior.
Goebel-Fabbri says it’s heartbreaking when it takes a diabetes complication to help a patient want to pursue recovery, but in the end, that diagnosis can be what saves their life.
Another study by Goebel-Fabbri and colleagues reports that in a group of 234 women with type 1 diabetes, 30 percent reported restricting insulin, and 26 of the women in the study died before the study concluded.
Insulin restriction conveyed a threefold increased risk of mortality participants who restricted their insulin also reported higher rates of diabetes complications by the conclusion of the study.
Looking at your own relationship with food
Disordered eating as a person with type 1 diabetes doesn’t always manifest into diabulimia. And for those who do struggle with insulin omission to manipulate their weight, that behavior likely developed long after other phases of an unhealthy relationship with food.
From the moment we are diagnosed, our lives begin to revolve around food and every morsel we eat. We have to pay so much attention to food in order to manage our blood sugars, that food, and meals in general, carry much more weight, anxiety, control, stress, restriction, and “rules” than normal.
It’s almost inevitable that anyone with type 1 diabetes will develop some degree of stress or control or rebellion around food because, in some ways, we benefit from controlling what we eat. But there is a clear line that, when crossed, is a sign that your relationship with food as a person with type 1 diabetes has become dangerous.
The Diabetes Eating Disorders Awareness (DEDA) shares these 4 questions to ask yourself about your current relationship with food.
- Are you restricting to the point where you are scared to treat a hypo?
- Do you ‘under-bolus’ for a particularly indulgent meal?
- Do you get scared to eat over a certain number of carbs per day?
- Have you withdrawn from things you like to do because of the food that may be involved?
Answering “yes” to one or several of these behaviors is worth seeking a therapist or another resource listed below for support.
Treatment & recovery resources
From DiabetesStrong, read: “Diabulimia: 3 Patients Share Their Path to Recovery.”
Ann Goebel-Fabbri
Dr. Ann Goebel-Fabbri works with patients in-person and helps people access appropriate treatment by providing phone and online consults to patients, loved ones, and treatment teams. She specializes in treating patients with type 1 diabetes and eating disorders. She worked for 16 years at the Joslin Diabetes Center and served as an Assistant Professor of Psychiatry at Harvard Medical School. She is a leading voice and expert in the treatment of ED-DMT1.
