How My Diabetes Gave Me An Eating Disorder

For Type 1 diabetics, restricting insulin is like a magic bullet for weight loss. But the consequences can be devastating and deadly.

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May 25 2016, 4:28pm

Image by Kit Neuschatz

When I was 16, I started to wake up feeling the way people feel after a night of hard drinking: woozy from nausea, desperately thirsty, bleary-eyed, and barely able to stumble down the stairs. At first, I thought it was the stress of my exams, but when I got worse—when I realized I'd lost 35 pounds in two months, I couldn't quench my thirst with any amount of water, and even paper-cuts took weeks to heal—I realized something might be seriously wrong.

It turned out I had Type 1 diabetes, and I'd been suffering from critical diabetic ketoacidosis, a serious condition caused by lack of insulin. I spent eight hours in the hospital that night, while a revolving door of doctors and nurses stuck various foreign objects into my veins, including a sliding scale of insulin. By the time I returned home two days later, I was bloated, bruised, and sore from the IVs, but ready to adjust to my new normal: I took my insulin. I ate three meals a day. I felt better.

Very quickly, my body began to recover, and with recovery came all the weight I'd lost. Pre-diagnosis, I had been sick, but effortlessly thin. Post-diagnosis, I couldn't zip any of my jeans. I resented the injections almost immediately.

"When you don't have insulin in your body, your body can't absorb any calories. So if you're a Type 1 diabetic and you don't have insulin, you are eating thousands of calories and still losing weight because your body isn't processing any of the calories," said Asha Agar Brown, the executive director of We Are Diabetes, an organization for Type 1 diabetics suffering from eating disorders. "When you re-introduce insulin, there's an immediate bloat to the body as your muscles and your tissue are able to finally get nutrients back. If you've lost twenty pounds [pre-diagnosis] and then you immediately gain it back, there's shame attached to that."

As Brown herself discovered after she was diagnosed with Type 1 diabetes, there was a simple way to drop the weight again: Just stop taking insulin.

It didn't take me long to realize that this worked. It started as an experiment, taking less and less insulin, until I wasn't taking any at all. If I withheld insulin, I could drop 15 pounds in three days, easy. I could still eat what I wanted without gaining weight, because without insulin, my body couldn't process any of the calories. Insulin restriction became a ritual as my hip bones and ribs became visible, and I fell into a stupor I can only describe as completely addictive.

Sondra Kronberg, an eating disorder specialist and spokesperson for the National Eating Disorder Association, told VICE that diabetics already have a heightened focus on food, calories, and portions, since every meal has an effect on insulin levels. If someone is already predisposed to having an eating disorder, "this extra attention given to the food, initially for medical reasons, can turn into a disordered fixation."

In my case, the condition is called diabulimia, a portmanteau of "diabetes" and "bulimia." There's very little research about diabulimia, but according to Brown, it's startlingly common. "Among Type 1 diabetics, it's one in every three," she told VICE. One study, which followed women with Type 1 diabetes over the course of 11 years, found that 30 percent restricted their insulin (sometimes, but not always, for the purpose of losing weight). Other research suggests Type 1 diabetics are twice as likely as non-diabetics to develop an eating disorder.

Related: Should Weed Be Used to Treat Eating Disorders?

Without insulin, my body started to shut down. On mornings after I hadn't taken my insulin, I would wake up with hideous nausea. Concentrating at school became impossible as my eyes would blur from raised blood sugar levels, which were often so high that they didn't even register on my meter.

My eating disorder became more important than my diabetes. One sickness had trumped the other.

Brown, who also suffered from diabulimia for over a decade before ultimately founding We Are Diabetes, said the consequences can be devastating. She considers herself lucky—"I still have my eyes and my feet, although I have severe muscle pain, called myofascial pain syndrome"—but has worked with others through her organization who have gone blind or developed heart disease from restricting insulin. Six individuals she worked with ultimately died from complications of the disorder.

"Withholding insulin for the purpose of weight loss is very dangerous," Kronberg told VICE. Short-term symptoms include frequent urination, excessive thirst, dehydration, and diabetic ketoacidosis, the condition that put me in the hospital when I was first diagnosed. In the long term, Kronberg said withholding insulin can also cause nerve damage, heart attacks, stroke, gum disease, and infertility. And if you do it for long enough, you will die.

And yet, I didn't really care. There was nothing parallel to the feeling of losing so much weight so easily, and my eating disorder became more important than my diabetes. One sickness had trumped the other.

After about a year of withholding insulin, when I couldn't make it up the stairs without my heart spasming, I finally told my mom what I had been doing. I spent the several days in the hospital, plugged into IV drips; later, a psychologist would diagnose me with diabulimia.

Slowly, I began reintroducing insulin into my life. I still struggle, admittedly. There have been relapses and days when my anxiety about my body is so crippling that I can't leave the house. But these days are becoming fewer and fewer; every day, I'm trying my best.

And right now, that's good enough for me.

If you or someone you know is struggling with an eating disorder, please visit the National Eating Disorders Association's website or call their helpline: 800-931-2237.

Follow Helena Busiakiewicz on Twitter.

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