Recognizing Diabulimia: A Type 1 Diabetes-Related Eating Disorder

What is “Diabulimia?”

The term “diabulimia” first appeared in academic literature in 2007  to describe a condition found in adolescent girls with Type 1 Diabetes who purposefully restrict their insulin intake in order to control their weight. 

The nature of T1D management makes people with T1D particularly at risk for developing an eating disorder. As an eight year old I began to count the carbs I ate in order to calculate the proper insulin dose to take. By the time I was eleven, I carried a small blue notebook with me everywhere to track each morsel that I allowed to pass my lips. 

At the end of a long day of sixth grade and after school activities, I took no greater pride in anything than circling a lower number of total calories eaten at the bottom of the day’s notebook page. 

Recent studies from the National Institute of Health show that 37.9% of females and 15.9% of males between the ages of 12-21 with T1D were reported to exhibit signs of disordered eating behaviors.

A person with type 1 diabetes has a pancreas that lost its ability to secrete insulin, and must inject themselves with carefully measured prescription insulin doses to keep their body functioning and alive. 

Whether you’re diabetic or not, the human body requires insulin production and absorption to transfer the glucose in the food you eat from your bloodstream to your body’s cells where it’s then converted to energy. Insufficient insulin levels means it doesn’t matter how much

you eat or don’t eat; your body will begin to starve and turn to breaking down muscle and fat in order to survive. 

Once I reached high school I’d been restricting my insulin intake for years, and it started to show in my academic and athletic performance. If I was able to conjure the energy to get to school, I’d stumble through my classes in a dissociative, depressed haze. At swim practice I fell from leading the lane in workouts to fighting my withering muscles as I got lapped by my teammates over and over again. 

My grades dropped as my swimming times climbed, and I used diabulimia as an escape from the self disgust permeated throughout my reality. 

Without insulin in your body, you will die. With low levels of insulin in your body for an extended period of time, you will begin to disappear. 

My body had become a cage, and my mind, the tortured animal too preoccupied with clawing at the walls to notice the door was unlocked and left open the entire time. 

Looking back, I simply needed someone to calm me down and guide me toward the door. 

An Un-google-able Question 

Since the discovery of insulin in 1921, T1D has been known for its impact on a person’s physical health in the medical community. Only within the last decade have researchers begun to shift their focus to the mental tolls T1D can have upon a person. 

I was diagnosed with anorexia nervosa at 12 years old, 10 years after I was diagnosed with T1D. My eating disorder-focused treatment plan from the hospital’s ED-recovery unit never acknowledged my type 1 diabetes except to enforce the idea that food recovery came first, and everything else second. 

Through middle school I focused on eating enough to fuel my pursuit of becoming a collegiate athlete while fighting the incessant battle of silencing the ED thoughts in my head. It

felt impossible to track the carbs I was eating without falling back into my old restrictive habits. My blood sugars became increasingly erratic, and ran almost constantly high. 

Acute episodes of high blood sugar, or hyperglycemia, can cause symptoms such as frequent urination, excessive thirst, fatigue, nausea, and irritability. 

Chronic hyperglycemia has devastating effects on a person’s physical health in the form of diabetes ketoacidosis, persistent infections, electrolyte imbalances, kidney failure, nerve damage, loss of consciousness, and death. 

And weight loss. 

As my body shut down, my mind followed. During my sophomore year of high school I sought relief through self harm. I gave up on my dream of becoming a collegiate athlete, or of becoming anything at all. I needed to see that my pain was real, that it wasn’t just a phantom haunting my mind. 

Diabulimia remains an enigmatic issue due its complex psychological side. Chronic hyperglycemia impacts a person’s mental health by increasing one’s risk of brain fog, depression, and anxiety. People with T1D commonly experience diabetic burnout, which is when someone becomes so overwhelmed with managing their disease they neglect their care altogether. This appears with behaviors very similar to diabulimia. 

By the time I reached high school, the toll diabulimia was taking on my body was noticeable. 

“What’s going on?” My swim coach pulled me out of the pool at a 6am morning practice. “You look like you’re swimming through mud, have you been sleeping? You look terrible.”

I burst into tears. I knew Coach was worried, and trying to help. But I took her comments to confirm the shame I clutched so closely inside; I was visibly incapable and hideous and therefore, I should work even harder to disappear.

I didn’t even know where to begin explaining what was wrong to myself, let alone someone else.