Type 1 Diabetes and Eating Disorders: A Complicated Relationship

My eating disorder started when I was around 12 years old, when I started struggling with anxiety and depression. It was my secret though, and it stayed that way for a long time. I justified the behaviors in my head. I was a competitive figure skater and my weight was an issue. I just wasn’t naturally thin. I criticized everything about my body. I couldn’t think of one nice thing to say about myself.

Then a year later I was diagnosed with type 1 diabetes where I was told that after the initial weight loss that I had before diagnosis, I would be gaining all that weight back when I started on the insulin regimen that was required to stay alive…it was going to now be my life support. I was at the formative age of 13. Though I have never manipulated my insulin and had an abnormally high a1c, I have limited my insulin so that I limited the amount of food that I would eat each day.

Eating was something that I could control in a life of mine that often felt so out of control. In living with diabetes, you deal with the dreaded “food police” on a weekly basis. It’s a struggle to respond to the food police.  “Are you sure you should be eating that cookie?” I’ve finally figured out how to answer.  “I’m sorry.  Is it yours?” But living with diabetes is very difficult. People will approach me and say, “You’re not that overweight, how did you get diabetes?” Or “Did your parents feed you too much candy as a kid?” I struggled with low self-esteem, and some days I wasn’t strong enough to give the educated answer back because I had such low self-worth.

My seemingly perfect life to the outsiders started to unravel and I was starting to lose my grip. Though I was fully functioning and achieving, I would say I was joylessly striving through life. Any goal I hit was not good enough. Any amount of weight I lost was never thin enough. With an eating disorder, it really isn’t about the weight, though some people perceive it is. It’s true that your brain thinks in a distorted way.

For me, my eating disorder was triggered by low blood sugars that would cause me to then binge. I would then feel tremendous guilt around the “bad food” I had just consumed, so I would purge by way of self-induced vomiting, over exercising and/or laxatives or diet pills. This is what my eating disorder looked like. For others, you may have heard stories of people purging by way of omitting their insulin. This is called “diabulimia”. I refer to my dual diagnosis as ED-DMT1 (eating disorders in diabetes mellitus type 1) because it’s what I’m personally the most comfortable with. You may never have heard it called that before. Let me give you a little bit of a background. A group of medical professionals got together several years ago to discuss what would be a proper term to use for this co-occurring illness. This is what was decided (though neither are medically recognized terms in the DSM5)…

The dual diagnosis of an eating disorder and type 1 diabetes is often referred to as “diabulimia”, however this is not a medically recognized term and it is not an accurate description. Among some academics, the nomenclature for eating disorders in diabetes mellitus type 1 (ED-DMT1) is used to denote the spectrum of disturbed eating behavior found within this specific demographic.”

-Jacqueline Allen, Birkbeck University

I was 24 and at a regular check-up by a physician when they diagnosed me with an eating disorder and asked me to check in to an inpatient treatment facility to get the help that I desperately needed. I was shocked that someone had finally confronted me about my behaviors. That day she diagnosed me with bulimia. What I will say is my journey to recovery has been long. I spent four years of my life in and out of treatment facilities all across the country. I had to sacrifice a lot. My former life seems a distant memory of mine. I clung to the people around me who I trusted and loved the most. They were by my side through each hospitalization and each triumph. I had to realize life simply couldn’t be done on your own. The sooner I learned that lesson, the better. Humans need other humans to live. And boy did I.

During my year as the youth spokesman for the American Diabetes Association and the years after, I never heard anyone talk about eating disorders among people with diabetes. I attended conferences across the country, listened to top diabetes researchers and kept up on the latest trends. Not once did I ever hear anything about the connection between diabetes and eating disorders. Then I read a fascinating article in the Journal of Psychosomatic Research from 2002 titled “Eating Disorders in Young Women with Type 1 Diabetes Mellitus.”  The article concludes, “The prevalence rates of eating disorders amongst adolescent and young adult woman with diabetes are twice as high as in their non-diabetic peers.” It gave me a lot to think about. There are many reasons why, including:

  • You feel betrayed by your body with diagnosis of diabetes
  • Diabetes management focuses on food and numbers
  • You judge yourself being “good” or “bad” based on eating patterns or blood glucose level
  • Society setting “food rules” for people with diabetes
  • Belief that you “ate your way into diabetes”

I never sought out to be an eating disorder advocate. I’ve always been very comfortable in my role of speaking about diabetes. But my frustration has grown with two things:

  1. How our country perceives mental illness
  2. The existence of eating disorders in people with diabetes not being discussed nearly enough

I believe there needs to be an open dialogue here in the diabetes community about the high prevalence of eating disorders. Will you join me in having this conversation? Can we together take the stigma off of viewing a mental illness as a choice, and instead as a serious brain chemical makeup disease?

I believe secrets are what make us sick. As God has taught me, “The truth will set you free”. We need to have an open and accepting dialogue in our country and in our diabetes community.

Resources:

  • National Eating Disorder Association (NEDA) has a short screening tool approved for people 13 years and older on their website that is free to take to see if you’re at risk for an eating disorder, https://www.nationaleatingdisorders.org/screening-tool.
  • Are you concerned that you or a loved one may be developing an eating disorder? Center for Change has a 20-question survey on their website that you can take, and then call their staff afterwards to discuss at 888-224-8250.
  • To learn more about Center for Change’s type-1 diabetes and eating disorder program click here: https://centerforchange.com/programs/diabulimia/.

To learn more about Quinn Nystrom and the work that she is doing, visit her website at www.quinnnystrom.com.

6 Comments
  1. Avatar

    I agree with her analysis. I am now 59 and realized that my whole life (since the age of 19 when I was diagnosed) have had an eating disorder. Food became something just to survive not an enjoyment. Exercise became the right for all the eating wrongs I did. Just a cycle. To this day it continues.

    • Hi Maria,
      Please let us know if you would like us to put you in touch with Quinn…she may be able to assist with additional resources.

    • Thank you Maria for sharing your story. I think there is so many of us type 1’s that struggle with an eating disorder, and so many that go undetected. I hope you know that there are great programs out there that specialize in the treatment of type 1 diabetes and eating disorders. I would also be happy to send you a small booklet that just came out about this co-occurring illness. If you e-mail me your address, I’d be happy to mail it to you free of charge.

  2. Avatar

    I cried reading this. I’ve been a T1d since 1973 and struggle with food, weight, and food police on a daily basis.

    • Avatar

      Hi Kati,
      You are not alone. If you would like additional resources or support, please let us know. 🙂

    • You’re not alone. Women with type 1 diabetes are 2.5 times more likely to be diagnosed with an eating disorder. I hope you know that there are great programs out there that specialize in the treatment of type 1 diabetes and eating disorders. I would be happy to send you a small booklet that just came out about this co-occurring illness. If you e-mail me your address, I’d be happy to mail it to you free of charge.

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