It is National Eating Disorder Awareness Week, and many in the patient blogosphere are bringing much-needed attention to this issue. This year’s theme is one that resonates well for us in the D-Community: “Everybody knows somebody“…
We know that many fellow PWDs (people with diabetes) struggle with this very issue to varying degrees. Some stats show that type 1 PWDs are twice as likely to develop an eating disorder! Mike wrote about his own struggles with emotional eating last month, and fellow DOC’er Lee Ann Thill has created a site called the VIAL Project, where fellow PWDs can share their own stories about eating disorders. Most recently, the Diabetes Advocates came together to get the word out about these concerns, as well.
Today, we’re talking with Asha Brown, a 27-year-old type 1 PWD from Minneapolis, MN, who struggled with one of the more dangerous diabetes-specific eating orders: diabulimia. For those unfamiliar, diabulimia is the unofficial term given to people (mostly women) with diabetes who skip insulin injections to induce ketoacidosis, which then helps them lose weight, because the body burns fat for energy. It increases both short-term risks like diabetic coma, and long-term risks like complications later in life.
In early 2008, after struggling throughout high school and college, Asha discovered an article in Self magazine about diabulimia. She was struck by the similarities with her own circumstances. In 2009, then 24-year-old Asha checked herself into The Melrose Institute at Park Nicollett, located in the suburbs of Minneapolis, one of the few eating disorder centers with a program specifically for people with diabetes.
Now, in addition to her work as an actress and Certified Nursing Assistant at a private school, Asha launched a new organization, We Are Diabetes, focused on raising awareness about D-eating disorders and getting people the help they need. Last Fall, Asha was interviewed for an upcoming article in The New England Journal of Medicine and spoke at the National Eating Disorder Associations conference in October on type 1 diabetes and eating disorders.
DM) What do you think were the main triggers for your own eating disorder?
AB) The main reasons I developed an eating disorder was because of my diabetes, which is why I work so hard to help those who are struggling like I was. I want them to realize that there is a way to live in peace with an illness that requires daily management, control, numbers and learning to adapt to change and the “unknown.” I’ve been T1D ever since I was 5 years old, and growing up, I heard every single person who doesn’t quite understand T1D say, “Oh she can’t eat that,” which created a deep resentment inside me. I was tired of explaining myself to everyone. I was an actress and dancer, and I was tired of worrying about going low before performing, so it became easier to keep my blood sugars high so I wasn’t as anxious about my diabetes getting in the way of my life!
What I realize now is that I actually created much more anxiety by ignoring my diabetes. Lows are going to happen, that’s why you always have some juice, some glucose tabs, and that’s why you tell people about your diabetes so that if something happens, they can help you!
Tell us about finding that early article on Diabulimia. How did that change your life?
In 2007, I read an article in Self magazine, and it was the first article that I had ever seen about diabulimia. I was very scared because I was still struggling. I couldn’t believe that I wasn’t the only person doing this. A year after the treatment, another nurse told me the name and contact info for the woman who wrote the article, and Erin is now my co-founder of We Are Diabetes and best friend! Her choice to write and speak out was what gave me the bravery to seek help. And now we’ve built this organization to help others.
I would say that reading that article made it real to me. But then I wasn’t able to deny that this article was basically talking about me. I thought I was the only person. I didn’t know about any online support. I never told my doctor that my high A1C was on purpose! I just said that I didn’t know what was going on. For a person who had been lying for years, seeing all this truth in this article, I realized I could get help at a real treatment center. So this was like the first step.
Was it a difficult decision to seek treatment?
My husband, Danny, was the reason I finally surrendered to treatment. We had only been married for a year before I went to Melrose and I realized that if I didn’t find a way to live without my eating disorder, I would lose him. He gave me the tough love that I really needed. Danny told me that he wasn’t going to be in a relationship with someone who was killing themselves. He would not stay with me unless I started to really fight my eating disorder. That opened my eyes and scared me enough to realize that even though I was afraid of what going to treatment would be like, the idea of losing the love of my life was much more scary!
Can you describe what a typical day was like at The Melrose Institute? Give us a picture of what was involved in your stay.
When I was in the inpatient program, a typical day began with being weighed “blind” meaning I did not see the number, testing my blood sugar and planning my dose for breakfast, showering, taking my morning medications, then taking my insulin and having breakfast.
After a meal we needed to find a mindful calm activity to do for 30 minutes that did not involved trying to burn calories or do anything self destructive. There was a game room with crafts and puzzles, but I always just wrote in a journal or meditated. The rest of the day was full of groups. It usually started with group therapy, then individual appointments with a GP, an endo, a psychiatrist, a nutritionist, and a psychologist. I never saw ALL of these specialists on the same day but met with each of them at least three times a week, sometimes more if needed.
In between all of this I tested my blood sugars, had snacks and meals and had my family visit me in the evenings during visiting hours. There were also programs devoted to arts and crafts, yoga, basic nutrition, etc. but my specific track for type 1 diabetes at The Melrose Institute also offered special groups and outings just for the T1D patients. I honestly think that was what helped the most. This was the first time I realized I wasn’t the only T1D that struggled with an eating disorder (always the odd person out with the chronic illness) in there. I met other girls who were struggling with exactly what I was struggling with and it made a huge difference to know I wasn’t alone.
How was your family involved in your treatment?
My family was very supportive. They knew I had struggles but did not know how extreme I had been with my insulin omission and binging issues. My dad, who is also a T1D and my hero, actually came with me to my initial assessment at Melrose and has been a powerful supporter and inspiration, not only in my recovery but also through my entire life. My dad’s ability to deal with living with T1D and still find the time to be a dad, a husband, a musician, artist, and a professor made me realize that I could figure this out. I could find a way to live my life and be happy even if it meant working a litter harder and planning ahead a lot more.
What has been the hardest thing about your recovery?
Not giving up even when it’s hard. I had no idea what my body would be like once my A1c finally came down to a healthy level. I was afraid of what complications I would have to deal with and honestly I was afraid I would gain a lot of weight and not have any sort of control over my body. I was also afraid of not having my eating disorder to hide behind. I had no idea how to go to a job and be a “normal person” anymore; my eating disorder had taken over every ounce of my life and all my choices were based on an addiction I was going to give up. It was the scariest thing I have ever done in my life.
What I learned was that my body loved having insulin running through it. I could breathe fully again and I became so much stronger and had so much more energy as the weeks of recovery progressed. I did gain some initial weight, but once I learned how to cope with my emotions instead of eating to avoid feeling them, and once my body recovered from all the damage I had put it through for almost 10 years, I settled at a very healthy size and shape for my height. I no longer look at the mirror to judge my imperfections. I used to spend hours staring at my body in the mirror and hating not only the vicious cycle of overeating and insulin omission, but hating my diabetic body for “having a low” when I didn’t want to be interrupted. Now I look in a mirror to make sure there is nothing stuck in my teeth!
How much did your stay cost? Are eating disorder treatment centers covered by insurance?
My treatment center bill took two years to pay off. My insurance at the time did cover my stay at Melrose at 80%, which left us with the other 20% to pay off. It was NOT cheap! Having that debt prevented us from moving to a nicer apartment and we had to be very careful how we spent our money after that. I went through different phases with how I felt about having to pay so much money in order to seek the support and help I needed in order to live. I don’t think I would have ever been able to go to treatment if my insurance hadn’t covered it as much as they did.
What are some of the signs and symptoms of an eating disorder? What should parents and loved ones be on the lookout for?
When people have high BGs, there are some of the obvious symptoms like excessive thirst and frequent urination. A few things that are potentially signs for diabulimia or any type 1 body image / eating disorder issue include discomfort with eating or taking insulin in front of people. People will say, “Oh, I ate at home,” or “Oh, I’ll eat later.” Or you never see them take their shots or check their blood sugar.
There might be a change in eating habits or lack of interest in a family meal. Is the person starting to get nervous around food and meals? Focus on food and weight are really a very prevalent part of this disease. And in the majority of women, when alone they eat a lot more. Is there a pattern? Is this happening every couple of days, or is it happening frequently? Are they going into DKA five times a month?
Another thing is having low energy, which is a sign that blood sugars are high for a long period of time.
Tell us more about your organization, We Are Diabetes. What are you working on?
I wanted to create a foundation that would not only have all the facts for people who are also struggling with an eating disorder, but also very honest information about how people can get help. There are very few eating disorder treatment centers that have the ability and the educated staff necessary to provide safe care for a T1D, and it can be an exhausting battle with insurance if they initially do not agree to cover the cost. But there are ways to fight this! We offer a lot of information on the We Are Diabetes website on how to deal with insurance and we also have a free referral service t0 help find providers in your area.
We’re developing a lot of different programs to give anyone who is a type 1 diabetic and struggling with an ED to get the help they need — not just with HCP but also family and friends at home. We’ve developed a brochure for health care providers to can keep in their office, not just about how to support someone, but also about the signs and symptoms of someone who might be struggling. We also take those to JDRF walks, and other diabetes-related organizations. We’re also developing relationships with eating disorder organizations to do some educational webinars.
We work one-on-one with people who contact us, and we work to find the best fit based on their support at home and their insurance coverage to get them the help they need right away.
What advice do you have for someone dealing with diabetes and an eating disorder?
My advice is to talk to someone you trust. We Are Diabetes can help those who are struggling develop some tools for navigating these difficult conversations. Being honest about our deepest, darkest secrets is NOT easy and it’s especially hard for T1D’s to admit when they might be struggling with an eating disorder because often their family or concerned loved ones react very strongly out of love, fear, concern, or sometimes denial. But the more we talk about it, the more we start to own our truth and move towards action to help ourselves.
In addition, you’re allowed to have these feelings, and feel upset about this chronic illness and you’re allowed to worry about your body. But there is a way to take care of your body and your diabetes, and developing an eating disoder is not a solution. It creates so many more problems in the long-run. When we spend so much time managing our diabetes it can be hard to find a balance between a healthy control and an obsession, but there is a way to honor your body and your illness without creating a potentially deadly situation.
But you don’t need to feel shame that you’re going through this!
Thank you, Asha, for being so open and honest about your struggles! We hope it can help others confronting their own eating disorders, and that your foundation is a key resource to discover the help needed to conquer this.