Eating Disorders and T1D

When I was a kid, about 10 or 11 years old, I experienced diabetes burnout leading to diabulimia. I didn’t know what it was it was then, all I knew is that I wanted to be a normal kid again.

I hid my insulin injections so that my mom’s plants and couch received them instead of me.

I threw my lunches in the bushes because I was tired of the restrictions put on me day after day.

I hid under my bed sheets eating all the sweets I could get my hands on.

And I felt awful

So freaking awful.

Without insulin, I was starving my cells of glucose, peeing out everything I was bringing in. My body was breaking down tissues just to keep me alive.

I wasn’t doing it for weight loss, I was doing it to regain normalcy.

This is a classic sign of diabulimia (also referred to as Eating Disorder – Diabetes Mellitus Type 1 (ED-DMT1)), which is a form of purging specific to people with type-1 diabetes.

The guilt I suffered, thinking I was igniting a premature death, haunted me for years.

And I thought I was the only one.

Nope.

Here’s a few stats for you: Women with type-1 diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers. In a study of pre-teen girls, eating disorders were identified in 8% of those with diabetes, compared to 1% of the same population without diabetes.

Why?

Because historically diabetes management and the pressure to be a “perfect diabetic” has facilitated that. The constant focus on numbers, both on a scale and in the BG meters, and the judgement that comes from family and healthcare professionals if those numbers aren’t in range can be debilitating. Add to that the required attention to meal planning, portion control, label reading, increased exercise and optimal weight expectations and you’ve got a recipe for eating disorders and disordered eating.

Think about that now.

I remember prior to diagnosis at 9, I was nothing but bones. I remember the comments made by the adults around me:

“She’s eaten half a roast and a jug of Kool-Aid – and look at her!”

“She’s eating sooo much, but she looks like a famine child!”

And for those who didn’t regularly see me:

“Holy smokes she’s skinny, is she eating?”

They weren’t compliments, they were words of worry.

After diagnosis, when I finally had insulin surging through me again, and I still didn’t gain weight, the adult’s worrying and hand wringing continued. I was put on a 2,700 calorie diet, but the thing was my appetite couldn’t handle that. I was forced to drink milk, but I hated milk. I cried when told to keep eating even though it was the last thing I wanted to do (Ellen Satter, who?). All my food was measured and put on a scale. Our cupboards had my charts taped to the insides of what I could and couldn’t eat. My lunches were boring and mundane, there was nothing exciting in there whatsoever.

I resented it all.

And the ironic thing is, those severe restrictions and the pressure to be a “perfect diabetic” sent me (and so many others) into a spiral of mismanagement. There is no doubt that having optimal HbA1c and Time in Range is beneficial to reducing the risk of diabetes complications and decreasing diabetes-related mortality, but if it’s at the expense of healthful eating and mentality, I’m not so sure it’s worth it – having an eating disorder can increase those risks just as severely as being out of range with your HbA1c.

So maybe, just like every day eating, it’s more about finding a balance for YOU and being good enough for YOU than it is about fitting into a specific number.

What do you think?

Related Post:
29 years: Perfect Storm for an Eating Disorder

References:
1. Bächle C., Stahl-Peche, & A., Rosenbauer J. (2016). Disordered eating and insulin restriction in youths receiving intensified insulin treatment: results from a nationwide population based study. International Journal of Eating Disorders. 49(2), 193-196.
2. Jones J.M. (2000). Eating disorders in adolescent females with and without type 1 diabetes: cross sectional study. BMJ: British Medical Journal (International Ed.) 320(7249): 1563. doi: 10.11136/bmj.320.7249.1563
3. Smith F.M., Latchford G.J., Hall R.M., Dickson R.A. (2008). Do chronic medical conditions increase the risk of eating disorder? A cross-sectional investigation of eating pathology in adolescent females with scoliosis and diabetes. Journal of Adolescent Health. doi: https://doi.org/10.1016/j.jadohealth.2007.08.008