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:
- How our country perceives mental illness
- 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.
- 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.
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.
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.
I cried reading this. I’ve been a T1d since 1973 and struggle with food, weight, and food police on a daily basis.
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.
Hy there! I also cried reading this, I’m 21 right now, having type 1 diabetes since I was 8. I had horrible teenage years with eating disorders, low self-esteem, being afraid of carbs and not fully accepting myself. I’ve heard that every illness has its own spiritual reasons why it’s developed. It is said that those who have diabetes can’t really believe that they can be loved… and if you think about it, this easily leads to wanting to be perfect and too high compulsion for conformity. I think we need to teach young girls like I was how to accept their condition and how to make themselves feel normal and that they are not different from any of their peers. They are special and will always have to be more disciplined than others.
You are so right…teenage years can be challenging on their own for anyone but even more so when you add diabetes into the mix. Thank you for being so open and honest about your own struggles…I’m sure it will help others feel less alone in theirs, and hopefully inspire them to reach out for help if they need it.
I can relate to this so much. I am 21 now, have been type 1 since I was 9 years old, and have had an eating disorder since I was 13. The combination of losing weight before diagnosis (wow you look thinner!) and then gaining it back and then some, the binging because you are low, the constant comments from people about what you should and should not be eating, the assumption that I’m diabetic because I’m fat (even though I’m type 1), the constant numbers in your head (how do you stop counting calories while having to keep counting carbs?), and so many more factors from my diabetes have played such a huge role in the development of my eating disorder and my struggle to recover. Even when I realized this years into my ED, I struggled to get help. Most resources I could find addressed diabulimia. My ED has always manifested as restricting food intake, over exercising, and binge-restrict cycles, so I felt really alone. My A1C has always been stellar because I work so hard to manage my diabetes. So when I just didn’t eat, my blood sugar would virtually never go high, I’d get praised by my endocrinologists for my excellent diabetes control, and it would encourage me to keep restricting like my ED somehow made me “healthier.” I still struggle with this. It’s so hard not to see a high BG and spiral thinking I’m only high because I ate too much and I could control both my blood sugar and weight by just not eating.
I really think it would be so much easier to recover without the dual ED-T1DM diagnosis. EDs like anorexia and bulimia are bad enough, but restricting because of my EDNOS/OSFED on top of T1DM meant I had ketones and low BGs constantly so I was always tired and nauseous. Diabetes also gave me an excuse to avoid fear foods (it will spike my blood sugar, etc) and to be checking nutrition labels and measuring food constantly. It was so easy to hide my ED. And because I was never underweight and ED-T1DM isn’t really recognized, I never felt like I really deserved help. I’ve seen multiple therapists and nutritionists over the years but no one with actual experience dealing with diabetes. Even though I’m doing better than I was years ago, it’s still such a struggle. EDs in diabetics need to be talked about so much more!
Thank you for being so courageous and honest about your story. Even just by posting here, you will be helping others to seek support and know that they are not alone. I’m not sure if you know of Mark Heyman, but he is a diabetes psychologist who also has type 1. If you are interested in reaching out to him, here is his info: https://cdmh.org/about-mark-heyman/. Thank you again for sharing your thoughts and experiences, and take good care.