It is National Eating Disorder Awareness Week, and several in the patient blogosphere are attracting much-needed focus on this issue. This year’s theme is one that contrasts nicely for us at the D-Community: “Everyone knows somebody“…
We all know that lots of fellow PWDs (individuals with diabetes) struggle with this very issue to varying levels. Some stats show that type 1 PWDs are twice as likely to come up with an eating disorder! Mike wrote about his own struggles with emotional eating each month, and also fellow DOC’er Lee Ann Thill has created a website 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 those issues, too.
Today, we’re talking with Asha Brown, a 27-year-old kind 1 PWD from Minneapolis, MN, that struggled with a few of the dangerous diabetes-specific eating requests: . For those unfamiliar, diabulimia is the unofficial term given to individuals (mostly women) with diabetes that bypass insulin injections to induce ketoacidosis, which helps them lose weight, because the body burns fat for energy. It raises both short-term dangers like diabetic coma, and long term dangers like complications later in life.
In ancient 2008, after fighting throughout high school and college, Asha found a post in Self magazine about diabulimia. She was struck by the similarities with her conditions. Back in 2009, subsequently 24-year-old Asha checked herself into The Melrose Institute at Park Nicollett, situated in the suburbs of Minneapolis, one of the few eating disorder centers using a program especially for individuals with diabetes.
Now, in addition to her job as an actress and Certified Nursing Assistant at a private college, Asha launched a new organization, We Are Diabetes, focused on raising awareness about D-eating disorders and getting individuals the help they need. Last autumn, Asha was interviewed for an upcoming article in The New England Journal of Medicine and talked at the National Eating Disorder Associations seminar in October on type 1 diabetes and eating disorders.
DM) What do you think were the principal triggers for your eating disorder?
AB) The key reasons I created an eating disorder was due to my diabetes, and that’s the reason I work so tough to help those that are struggling like I was. I need them to Understand That there is a way to live in peace with a disorder That Needs daily direction, control, numbers and learning to adapt to change along with the “unknown” I’ve been T1D ever since I was 5 years old, and growing up, I discovered each and every person who doesn’t quite understand T1D state, “damn she can’t eat this,” which generated a profound bitterness 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 maintain my blood glucose high so I was not as concerned about my diabetes getting in the way of my life!
What I understand now is that I actually created more anxiety by ignoring my diabetes. Lows are going to take place, that is why you’ve got some juice, some sugar tabs, and that is why you tell folks about your diabetes so that if something happens, they can help you!
Inform us about finding that ancient article on Diabulimia. How did that change your life?
In 2007, I read magazine, also it was the first article that I had seen about diabulimia. I was very scared because I was still fighting. I could not feel that I wasn’t the only person doing this. A year after the treatment, another nurse told me the name and contact information for the woman who wrote the guide, 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 out help. And today we have assembled this business to help others.
I would say that reading this article made it real to me. But I was not able to deny that this article was basically talking about me. I thought I was the only person. I didn’t know about any internet support. I never told my doctor that my high A1C was on purpose! I simply said that I didn’t understand what was going on. For a person who had been lying for years, seeing this fact in the following article, I realized I could get aid at a actual treatment centre. So this was just like the first measure.
Was it a tough choice to seek remedy?
My husband, Danny, was the reason I finally surrendered to remedy. We had just been married for a year before I moved to Melrose and I understood that if I did not find a way to live with no eating disorder, I would lose him. He gave me the hard love that I really desired. Danny told me that he was not likely to maintain a relationship with a person who was killing themselves. He would not stay with me I began to truly combat with my eating disorder. That opened my eyes and scared me enough to understand that even though I was fearful of what about remedy could be like, the idea of losing the love of my life was much more frightening!
Can you describe what a typical day was like at The Melrose Institute? Give us an image of what was included on your stay.
When I was at the inpatient program, a typical day started with being weighed “blind” meaning I didn’t see the number, testing my blood glucose and planning my dose to get breakfast, showering, taking my morning medications, then taking my insulin and having breakfast.
After a meal we needed to locate a mindful calm action to perform for 30 minutes that did not involved attempting to burn off calories or do anything destructive. There was a game room with puzzles and crafts, but I just wrote in a journal or meditated. The rest of the day was filled with groups. It typically started with group treatment, then individual appointments with a GP, an endo, a psychiatrist, a nurse, and a psychologist. I never saw ALL of those specialists on the same day but fulfilled every one of them at least three times a week, occasionally more if desired.
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 applications devoted to arts and crafts, yoga, basic nutrition, etc. but my specific monitor 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 was not the only T1D that struggled with an eating disorder (always the odd person out using all the chronic illness) in there. I met other girls who were fighting with exactly what I had been fighting together and it made a huge difference to know I was not alone.
How was your family involved with your treatment?
My family was very supportive. They knew I’d fights but did not understand how extreme I’d been together with my insulin omission and binging issues. My dad, who’s also a T1D and also my hero, actually came with me to my initial assessment at Melrose and has been a powerful supporter and inspiration, not just in my healing but also through my whole life. My dad’s ability to cope with living with T1D and still discover the time to be a dad, a husband, a musician, artist, and a professor made me realize that I could figure out this. I could discover a way to live my life and be happy even if it meant working a litter harder and planning forward far more.
What’s been the toughest thing about your own recovery?
Not giving up even when it’s hard. I had no clue what my body could be like after my A1c finally came back to a healthy level. I was fearful of what complications I would need to deal with and honestly I was fearful I would gain a lot of weight and not have any type of control over my own body. I was also fearful of not having my eating disorder to conceal. I had no clue how to attend a job and become a “normal person” anymore; my eating disorder had obtained over every ounce of my life and all my decisions were based on an addiction I was planning to give up. It was the funniest thing I’ve ever done in my life.
What I learned was that my entire body adored having insulin functioning through it. I could breathe fully again and I became much stronger and had much more energy as the weeks of recovery improved. I’d gain some weight, but after I learned how to deal with my emotions rather than eating to avoid setting them, and after my body recovered from all of the damage I’d put it through for nearly 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 some time staring at my body in the mirror and hating not just the vicious cycle of overeating and insulin omission, but hating my body for “with a low” when I did not need to get interrupted. Now I look in a mirror to make sure there isn’t anything stuck in my teeth!
How much did your stay price? Are eating disorder treatment centers covered by insurance?
My treatment centre bill took two years to repay. My insurance at the time did pay my stay at Melrose at 80%, which left us with another 20 percent to cover off. It wasn’t affordable! Having that debt prevented us from moving to a nicer apartment and we all needed to be very cautious how we spent our money then. I went through different phases with how I felt about having to pay so much cash in order to seek the help and support I needed in order to reside. I really don’t think I would have been able to go to remedy if my insurance had not 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 are on the lookout for?
If people have high BGs, there are a number of the obvious symptoms such as excessive thirst and frequent urination. A number of things which are potentially signs for diabulimia or any kind 1 body image / eating disorder problem include distress with eating or taking insulin facing people. People might say, “Oh, I ate in the home,” or even “Oh, I’ll eat later.” Or you never see them take their shots test their blood glucose.
There might be a change in eating habits or lack of curiosity about a family meal. Is the person beginning to get nervous around meals and food? Focus on weight and food are really a very prevalent part of the disorder. And in nearly all women, when alone they eat a lot more. Is there a pattern? Is this happening every day or two, or can it be happening frequently? Are you currently going into DKA five times a month?
One more factor is having low energy, which can be a sign that blood glucose are high for a long period of time.
Tell us about your organization, We Are Diabetes. What exactly are you currently working?
I wished to make a base that would not just have all of the facts for people that are also struggling with an eating disorder, but also very honest information regarding how people can get help. There are very few eating disorder treatment centers which possess the ability and the trained staff necessary to provide care to get a T1D, and it can be an exhausting struggle with insurance if they initially don’t agree to pay the price. But there are ways to combat this! We offer a lot of information about the We Are Diabetes site about how to deal with insurance and we have a free referral agency t0 help locate suppliers in your region.
We are developing a lot of unique programs to give anybody who’s a type 1 diabetic and fighting with an ED to get the help they need — not just with HCP but also family and friends in the home. We’ve developed a brochure for health care providers to keep in their workplace, not just about how to support somebody, but also concerning the signs and symptoms of somebody who may be fighting. In addition, we take those to JDRF walks, along with other diabetes-related organizations. We are also growing relationships with eating disorder organizations to perform some educational webinars.
We operate one-on-one with individuals who contact us, and we work to locate the best fit according to their support at home and their insurance coverage to get them the assistance they need right away.
What advice would you have for someone managing diabetes and an eating disorder?
My advice would be to speak to somebody you trust. We Are Diabetes can help those that are struggling develop some tools for navigating these challenging conversations. Being honest about our deepest, darkest secrets is NOT easy and it is particularly hard to get T1D’s to admit when they may be struggling with an eating disorder because often their loved ones or concerned loved ones react very strongly out of love, fear, concern, or even occasionally denial. However, the more we speak about it, the more we all begin to own our truth and move towards actions to help ourselves.
Additionally, you are allowed to have those feelings, and truly feel angry about this chronic illness and you are allowed to worry about your entire body. However, there’s a way to look after your own body and your diabetes, and developing an eating disoder is not a solution. It generates so a lot more issues in the long-run. When we spend as much time handling diabetes it can be tough to discover a balance between a healthy control along with an obsession, but there’s a way to honor your body and your illness without creating a potentially deadly situation.
However, you don’t need to feel pity that you are going through this!
Thank you, Asha, for being honest and open about your struggles! We hope it helps others confronting their own eating disorders, and that your base is a key source to discover the aid needed to overcome this.
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This content is made for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn’t stick to Healthline’s editorial instructions. To learn more regarding Healthline’s partnership with Diabetes Mine, please click here.
Composed by on Jul 18, 2017
Composed by on Dec 06, 2017