It is a tremendous honor to be sharing this guest post with you today. The author, Asha Brown, a fellow woman with Type 1 diabetes, has grown to be one of my dearest friends over the last several years. I first met her in person when she shared her story at a local JDRF Adults with Type 1 meeting. We arranged to meet at a cafe shortly after. Getting to know each other -- sharing openly all of our deepest intimacies, fears, perceived failures, joys, frustrations, successes -- created a unique friendship that is one of the greatest gifts in my life. I hope everyone meets a friend as generous, patient and kind as Asha at some point in their journey.
She now devotes a good part of her life to helping individuals around the United States heal from and overcome this disabling, terrifying and often fatal condition affecting both men and women with Type 1 diabetes. She is filled with more passion and enthusiasm in her determination to help others than I have ever witnessed in another human being. This passion, along with the knowledge and experience she gained first-hand from suffering with an eating disorder, is what fuels her motivation to save the lives and positively affect the future of countless others.
Please read on for this inspiring woman's story. I was filled with goosebumps and held back tears as I read about her courageous journey. I know you will be touched too. Thank you Asha, for not only being my best friend, but sharing your story with my blog on OnTrack Diabetes.
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 Type 1 Diabetes (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. All of the chronic health conditions I live with (Type 1 Diabetes, Hypothyroidism, and PCOS - Polycystic Ovarian Syndrome) are portrayed as barriers (and sometimes even as the cause) to healthy weight maintenance and I became anxious that I was doomed to live in a body that would never “play fair.”
At age 13 I worried that my petite frame would suddenly morph into a body that was no longer my own. In an act of panic I restricted my food intake, obsessively worked out at the gym for hours every day after school and when that wasn't enough to ease my growing fear that my life and body were totally out of my control because of my stupid chronic health conditions, I started to omit my insulin. I figured if I didn't have to worry about being low in front of my friends, or on stage at least I could pretend that I was normal.
What started out as an attempt to avoid having low blood sugars and an honest desire to just not have to “worry” about my diabetes for a few hours became the driving force of a very dangerous eating disorder that nearly cost me everything; my career as an actress, my marriage and my life.
By the time I went to college my eating disorder had become the single most important thing in my entire life. It dictated who I was, my daily schedule, my relationships and every single choice I made; both for school and in my personal life. No longer living with my family (who were already concerned about my eating habits and poor diabetes management) made it easy to fall into the dangerous and all consuming rituals associated with diabulimia. None of the new friends I made at school ever questioned my choices or my behaviors because no one had the slightest clue about type 1 diabetes, they just figured I knew what I had to do to take care of myself.
The obsession with weight, food, and exercise while coping with multiple autoimmune disorders left no time for studying. I passed my classes with the bare minimum of requirements and in some cases failed them altogether. I rarely went out with my friends or did anything that used to bring me joy; I used all my energy to hide my eating disorder from my friends and my family.
Five and half years ago I took my first step towards living fully in my life again when I made an assessment appointment at The Melrose Center 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.
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.
In the beginning it was terrifying. I had to learn how to do everything again, but this time without my eating disorder influencing my thoughts and choices. Being in a relationship, buying food at the grocery store, going to work everyday and so many other facets of life were now totally different experiences, and it took time for me to adjust to even the most basic of “normal people activities.”
I faced each new challenge during my initial recovery head on, reminding myself that I had the choice to take the cowards way out (by returning to my addiction) or that I could make new choices that I could actually be proud of. Every new experience in recovery (no matter how small, like going out to dinner at a new restaurant with my husband) offered a lesson for me. Although recovering from an eating disorder was indeed the most difficult thing I have ever done, I wouldn't trade my experience for the world; because now I know I can do anything I set my mind to achieving.
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. 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 non-diabetic peers.
Once I was solid in my recovery, 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 *diabulimia 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 (wearediabetes.org) was founded by myself, my co-founder Erin Williams and my devoted husband in January 2012. We have created many unique resources for those who need support with their co-occurring type 1 diabetes and eating disorder (ED-DMT1) and 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.
*“Diabulimia” (or ED-DMT1) 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.
- Asha Brown
Note from Cynthia: National Eating Disorder Awareness Week (NEDA) is February 23rd - March 1st, 2015. Eating disorders are a serious health concern that many parents, friends and family of Type 1 individuals are not aware of. Please share this article to promote awareness and help save the lives of our loved ones with diabetes. Way too many precious lives have been taken already. Thank goodness there are individuals out there like Asha Brown dedicating their life to helping others find recovery.
In Peace & Wellness,