Imagine the difficulty in treating a dangerous disease that can actually promote the onset of another deadly disease, one that makes the first one much worse. That is the horror of “diabulimia.” Recent studies have suggested that about 30 percent of type 1 diabetic women omit their insulin for weight loss purposes and researchers have found that type 1 diabetic girls are two to three times more likely to develop an eating disorder than their nondiabetic peers. Diabulimia is not an official diagnosis or a medically recognized term; it refers to those with diabetes who purposefully skip or reduce their insulin doses in order to lose weight, to the point where their behavior constitutes a diagnosable eating disorder and leaves their diabetes condition in chaos.
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 it’s 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.
Being in a relationship, buying food at the grocery store, going to work everyday and so many other facets of life must now be faced without the comfort of only having to focus on our self-destructive addiction. My name is Asha Brown and I have recovered from diabulimia.
Four and a half years ago I took my first step towards living fully in my life again when I made an assessment appointment at The Melrose Institute in Minneapolis, Minnesota. I was strongly encouraged to check into the inpatient treatment program that very day due to the severity and danger of my out-of-control diabetes. It was the scariest (and the bravest) thing I have ever done.
I lived in a self-made hell for almost ten years of my life. My eating disorder didn’t start over night; there were multiple factors that led me to choose this self-destructive behavior. The challenges and complications that living with T1D can create while trying to just be a “normal” teenager ignited a deep resentment and a deep sense of anxiety inside of me. I felt that I was trapped inside a failed body that would not allow me to ever feel truly free. What started out as an attempt to avoid having low blood sugars when performing on stage and an honest desire to just not have to “worry” about my diabetes for a few hours became a dangerous eating disorder that nearly cost me everything; my career as an actress, my marriage and my life.
Living with my diabetes today is very different after finally coming to terms with my eating disorder. There are still challenges in navigating my diabetes management through my daily life, and there always will be. The difference is that now when an unexpected challenge arises I am not afraid to do whatever is necessary in order to take care of my type 1 diabetes and protect my strong recovery.
Unfortunately my story is not as unique as one might think. Once solid in my recovery from diabulimia, I started to seek out other type 1 diabetics like me who struggled with the fact that in order to take care of our chronic illness, there was a necessary focus on food, numbers and control that could easily manifest into a deadly eating disorder. I discovered that there were a staggering amount of type 1 diabetics struggling with insulin omission and that their pleas for help and support from their endocrinologists, insurance providers, and even their own families were unheard. I knew that I had to change that.
We Are Diabetes was founded by myself, my co-founder Erin Williams and my devoted husband in January 2012. We have created many unique resources not only for those who may be suffering from diabulimia, but also for any type 1 diabetic who may feel a sense of isolation or “diabetes burnout.” Type 1 diabetes only makes up a mere 5-10% of the entire diabetes population. It is still misunderstood by the general public, and unfortunately, even by some healthcare professionals. Many of the issues we face as type 1 diabetics are invisible; our friends and co-workers don’t understand how hard we work on a daily basis to feel “normal.” We Are Diabetes strives to be a place where type 1 diabetics can feel understood and supported.
There is growing awareness among diabetes healthcare professionals about the risks of those living with type 1 diabetes developing an eating disorder. However there is a substantial disconnect between the knowledge and understanding of type 1 diabetes at most eating disorder facilities. The dual diagnosis of a chronic illness like type 1 diabetes and an eating disorder is extremely complicated and demands a proper type of professional care; both for the emotional and the physical aspects being treated. We Are Diabetes has networked with specific treatment centers across the United States that have the experience and the expertise necessary to help those who are suffering from diabulimia. There are many options available for someone who is seeking help. For more information about what kind of support may be available in your area please email firstname.lastname@example.org.
By Asha Brown