“Confront the dark parts of yourself, and work to banish them with illumination and forgiveness. Your willingness to wrestle with your demons will cause your angels to sing.”
– August Wilson
I have been struggling with diabulimia since 2001. Diabulimia, to me, is a mental disorder that tricks your mind into thinking you are overweight from taking insulin, and that by skipping insulin or taking it in small amounts, the weight will simply fall off.
I can’t tell you how many times I have had my condition dismissed as just a mental thing. Of course it is. It’s a mental thing that is really hard to ignore or cure. I was 15 years old when I figured out that taking less insulin meant I would lose weight. I’m now 28, and I still struggle.
Diabulimia terrifies me, but I haven’t yet been able to stop. I’ve seen what it does to people with Type 1 diabetes first-hand. I’ve met women with gastric pacers, neurogenic bladders, and amputations. It scares me into stopping temporarily; I’ll have maybe 2 great days of faithful insulin administration, and then I will fall back into old habits.
My eating disorder reached its nadir with a broken continuous glucose monitor (CGM) and some bad insulin. Previously, I had been managing my diabetes with a Dexcom CGM and a Medtronic insulin pump. Somehow, I ended up with a spoiled vial of insulin, and I was constantly frustrated with the blood sugar graphs I was getting from my Dexcom. Not two weeks later, the Dexcom transmitter died. Just shut down. I had to purchase a new one, and I chose not to do it.
It was a conscious plan to stop taking care of myself. I was burnt out and fed up. I stopped checking my blood sugars, and I just wore the insulin pump for show. I didn’t bolus for my meals or snacks. I would sometimes test my blood sugar out of curiosity, and laugh at the number that greeted me. Five hundreds, four hundreds.
My endocrinologist knew exactly what I was doing. She never judged me for what I do — she’s well-versed with diabulimia and knows it is associated with mental illness and Type 1 diabetes. Over time she helped me form a plan to combat my eating disorder. The plan is simple – a low-carb diet with lots of healthy fat, proteins, and vegetables.
It’s been almost three months since we started the plan, and for the most part, I’m sticking with it. I’ll occasionally have days where I don’t test my blood sugar, or I eat 50 or more grams of carbohydrates per day, but I’m taking my insulin more often and I now even exercise, thanks to having more energy.
Having my friends and family support me through this has been invaluable. It’s also more than I deserve for what I have put them through — the constant lying and hiding. Blogging about my experience with Type 1 diabetes and diabulimia also has been a form of therapy for me. I’m happy to know that I’m not alone in this, that it’s pretty common among girls and women with Type 1.
Every time I give in to diabulimia, it feels like I’m giving up. What I have come to find out is that falling down is just another valuable learning experience. As I write this entry, today is a good day. My blood sugars haven’t gone above 130 mg/dL. On days like this, I feel like I can do anything, and that’s reason enough for me to keep trying. And that’s what I’m going to do — keep trying.
If you think you might be suffering from a diabetes-related eating disorder, there are resources available to seek help. You can reach the Diabulimia Helpline, at (425) 985 – 3635 or go to diabulimiahelpline.org. Also, We Are Diabetes is an organization dedicated to helping people with diabetes-related eating disorders; their website is wearediabetes.org.