This is a 2 part conversation with Erin Williams and Asha Brown of We Are Diabetes, an organization primarily devoted to promoting support and awareness for the eating disorder diabulimia:
Diabulimia: is an eating disorder unique to the type 1 diabetic community. It is the act of omitting (skipping) your insulin injections for the purpose of weight loss. Those who suffer from diabulimia tend to also suffer from binge eating disorder due to the constant hunger they feel with extremely elevated blood sugars. The cycle of bingeing, skipping your insulin to “purge” the calories from the binge and then bingeing even more because the body thinks it is starving is an incredibly difficult cycle to free oneself from. Diabulimia is deadly.
Erin, you struggled with diabulimia for several years, was it during this time that you decided to create We Are Diabetes?
No, We Are Diabetes came after all my years of struggling. I was not in a place to give anyone help or advice until I figured it out on my own. After I got better I knew there was a need out there, but I didn’t know how to get started. That’s when I found Jenna, who helped me write my story for SELF Magazine about my life with Diabulimia. It was one of the first articles about diabulimia ever published in a major magazine. After that article came out many girls started contacting me on Facebook letting me know they were doing the same thing and they couldn’t stop themselves. It was unbelievable how many diabetics were out there, and for the first time I saw how large the need was.
However, I was not the one who came up with the idea to start We Are Diabetes. The ideas for this amazing company we started came from the Founder, Asha Brown who had read the article in SELF Magazine and shortly after, went into treatment. A few years after her initial recovery, Asha started working to promote awareness of diabulimia with a few organizations. She had thoughts of starting her own company and a nurse who works at The Park Nicollet Melrose Institute gave my contact information to Asha.
At the time Asha and I connected I’d been in recovery for about 6 years, and Asha was moving in to her fourth year. She told me about her thoughts of starting We Are Diabetes and I was on board! Asha was determined to give girls hope that were struggling with diabulimia, but was a little nervous about starting it, so she asked if I would join her efforts. We have both struggled immensely with diabulimia and are passionate about trying to save other girls.
As soon as the decision was made to create We Are Diabetes, we were unstoppable! Asha and I make a powerful team, and we both have unique strengths that will enable us to take We Are Diabetes to the place it needs to be.
The site has only been up for a few months now, but the feedback has been incredible and the individuals we’ve had the honor of advising and supporting in their journeys through recovery have touched both our lives in so many ways. We are both so lucky to have met so many fascinating, talented and beautiful people who are struggling with diabetes. The people we have met through WAD have shown us both how much strength and power we have within ourselves.
Asha, you also have first hand experience with diabulimia, tell me why you think women with diabetes are more likely to struggle with disordered eating? Can you also describe to me exactly what diabulimia is, what are the warning signs, what are the dangers etc.?
Anyone with type 1 diabetes knows that better control over your blood sugars and overall diabetes management means living a better, longer life. However women with type 1 diabetes go through constant changes with their body especially through their young adult life. Hormones, weight fluctuations during adolescences and learning “who you are” is hard enough for any young women growing up in the this media-infused society, but it’s much harder when you also have to constantly worry about your blood sugars, the carbs and calories of every meal, and trying to be “normal” like your friends.
I think girls with type 1 have some extra obstacles to face:
- The media promotes a message that you must be slender. When a girl with type 1 diabetes feels like her body is out of her control, and that she often doesn’t get to make choices, looking and feeling normal is everything. We live in a society where sixth graders are talking about going on diets, being a type 1 diabetic girl is very hard. Women in their 20-30’s are not exempt from this pressure either, in fact it really never ends no matter what age you are.
- The other obstacle is the burnout that all type 1 diabetics have to fight. Living with Type 1 diabetes means you are in a constant struggle to control the disease as much as you can, and at the same time be able to accept that your body is different, and even if you do everything right it may not “listen” to you.
This was definitely what I struggled with the most. As an actress and performer since age 4, growing up with diabetes was challenging when I had to perform. I didn’t have time to have a low blood sugar if I was getting ready to go on stage, and I didn’t want my diabetes to slow me down! Although I was able to manage decent a1cs for most of my childhood, by the time I was a Freshman in High School, diabetes had become my enemy; my one major obstacle keeping me from living my dream on the stage. My insulin omission started around this time and continued for 9 years.
This question is for both of you, what is your mission for WAD? How can we best serve women with diabetes who are struggling with eating disorders?
(Erin) Our mission for WAD is to let people struggling with diabetes know that they are not alone and that there is help out there. We want to squash the idea that anyone with diabetes is going to end up limbless and blind. People with diabetes are fully capable of living long, happy, healthy lives. We want to show those who are struggling that it is possible to turn your life around and that you can live your life without having to hide under the disease. I think that we can best serve those struggling with diabetes by adjusting our training on the disease. We cannot scare people into taking care of themselves. We cannot show them pictures and tell them stories about all the horrible things that can happen to people who are living with diabetes. That just makes people want to give up.
We can best serve those with diabulimia by educating doctors and people in the medical community. The medical community knows that something is wrong when 30-40% of the type 1 diabetic women are coming to them with extremely high a1cs, but the patients themselves are so ashamed of their behaviors and embarrassed to address it. Without proper communication between health care provider and patient, the issues associated with diabulimia continue to wreak havoc on the body and the patient continues to feel utterly alone and isolated. If better support were available for treating not ONLY the disease, but also the person WITH the disease, perhaps there would be less type 1 diabetics suffering in silence.
(Asha) Building awareness and getting people to our website is step one in the process of serving the many who are silently struggling from diabulimia. We Are Diabetes offers individual support, referrals to the treatment centers that are equipped to help type 1 diabetics with eating disorders as well as a private community where those who are in recovery can support those who are still struggling.
Part 2 will focus on Recovery, so stay tuned!