This week is National Eating Disorder Awareness Week. While I know many of us feel like we have an unusual relationship with food, there is a legitimate eating disorder related to diabetes: diabulimia. Diabulimia is the term frequently used for people who omit insulin in order to lose weight. Omitting insulin allows the body to burn fat for energy, but it also creates toxic ketones and causes many complications.
Asha Brown, a fellow type 1 PWD in the Twin Cities, has recovered from her eating disorder and experience with diabulimia. Asha has launched an organization, We Are Diabetes, to help spread awareness about eating disorders and bring hope to those who are suffering with it. You are not alone.
A Guest Post by Asha Brown
Living with type 1 diabetes means that you have a different relationship with food than other people. You live your life in between the demanding rituals that happen multiple times a day: before and after a meal or any type of snack. When I look down at my plate I don’t just see the food itself. I see numbers. After living with Type 1 Diabetes for 23 years, I have calculated the nutritional components of thousands of meals while also considering time of day, activity level, stress and many other necessary factors before deciding how much insulin I need to inject. Although I am now at peace with this routine, there were ten years of my life where I lived in a fog. I grew tired of the unyielding routines that Type 1 diabetes demands on a daily basis. I was afraid that others would see me as broken and fragile if I had a low blood sugar at an inconvenient time (and let’s face it, it’s always an inconvenient time to be low).
What started out as an attempt to just keep my blood sugars a little higher than normal to avoid any possibility of a hypoglycemic attack during a performance or out on a date, quickly manifested into a dangerous eating disorder. I became lost inside a cycle of coping behaviors that soon became my entire life. Diabetes felt like an unfair burden to me and to my life’s goals and I rebelled forcefully against it. I didn’t know how to ask for help and for years I didn’t know if I even wanted help; I had forgotten how to take care of myself and my eating disorder became my world.
My life changed in many ways the day I finally shared my secrets to my family and to my husband. I was lucky enough to receive treatment at one of the most qualified eating disorder treatment facilities in the country, the Melrose Center at Park Nicollet in Minnesota. It has a fully developed treatment track for diabetics with eating disorders. Recovering from any eating disorder is extremely difficult; it challenges a person both physically and emotionally. The process of learning how to cope with life and its unexpected challenges without the protection and safety of an all-consuming obsession leaves you raw and exposed to all of the emotional and physical feelings humans are capable of experiencing.
As I started a new chapter of my life in recovery, I soon discovered that I wasn’t the only T1D who had struggled with this dangerous eating disorder. In fact recent studies suggest that over 30% of Type 1 diabetic women may omit or restrict insulin for weight loss purposes at some point in their lives (Goebel-Fabbri et al, Diabetes Care, 2011). With a third of the T1D population silently struggling with this battle, I realized there was a great need for more awareness, education and supportive resources. After two full years of solid recovery, knowing that I would never return to the addiction that had once consumed my life, I began to reach out to others who needed help.
In January 2012, I founded the organization We Are Diabetes along with my friend Erin Williams. WAD primarily focuses on supporting T1Ds who are struggling with an eating disorder and advocates for living well and living strong with Type 1 Diabetes.
The daily challenges of living with this disease, as well as the emotional and financial toll it takes, can oftentimes result in a sense of defeat or isolation. WAD strives to breach the gap between the visit to the doctor’s office where you hear the “lectures” while nodding your head in compliance and when you are sitting at home alone feeling overwhelmed and frustrated. I spent so many years staying silent about how angry I was that I have to live with this demanding disease and instead of sharing my feelings, I developed an eating disorder to cope with the loss of control that I felt. If only I had known when I was struggling that I was not the only one who lived with such shame, guilt and anger about my disease. I want WAD to be a resource for any T1D who needs to know that they are not alone.
There are still days I curse this disease. I will never be one of those people who are “fine” about living with T1D (do those people even exist?) but I know that ignoring my chronic illness doesn’t make it go away! When I feel discouraged or sad about my diabetes, I talk about it. I have been blessed with an amazing online community of diabetic friends and a supportive husband who encourages me to share my feelings. I also find that having some creative outlets have really helped me stay grounded when I feel overwhelmed. I have gravitated to different types of creative outlets through my life and value each of them for the freedom they provide me. It’s important for people living with T1D to engage in activities and hobbies that serve as a reminder that there is more to life beyond the constant testing, doctors visits and carb counting. We are more than our diabetes diagnosis!
Helping other Type 1 diabetics who struggle with an eating disorder has helped me stay strong in my personal recovery. Becoming part of the DOC ( Diabetes Online Community) has also helped me find acceptance and strength in my life with T1D. There is a noticeable difference in my outlook on living with this disease now that I have a community of support that I can turn to! Connecting with others who “get it” is the most important factor in staying positive when living with any chronic disease. If you are a T1D and you feel lost, lonely or frustrated, don’t be afraid to reach out and ask for help from the DOC!
If you or someone you know is struggling with living with Type 1 Diabetes while also battling an eating disorder or is even just exhibiting some of the signs and symptoms of diabulimia, please visit the We Are Diabetes website for more information.