Divabetic
We Are Diabetes Founder, Asha Brown is one of the stars on our Diabetes Mystery Radio podcast: “Phantom of the Okra.” Asha’s personal story of recovering from diabulimia inspired the storyline of this year’s diabetes mystery podcast.
Asha’s openness and honesty on February’s Diabetes Late Nite inspired me to want to explore this topic with greater depth and compassion as well as raise awareness for Asha’s wonderful organization, the We Are Diabetes Organization within our Divabetic community. I am extremely grateful to Asha Brown for helping to guide me through the writing process. Her insight was invaluable.
The term “diabulimia” (also known as ED-DMT1) has often been used to refer to this life-threatening combination and the unhealthy practice of withholding insulin to manipulate or lose weight. People suffering from ED-DMT1 may exhibit any number of eating disorder behaviors or they may only manipulate their insulin and otherwise have normal eating patterns. This risky practice can have catastrophic health consequences.
Below Asha Brown helps us sheds more light on the topic of diabulimia in this blog post:
I barely remember life before Type 1 Diabetes . Diagnosed by the age of five, this illness affects so much of who I am and what I do. The first waking thought I have every morning when the alarm goes off is, “test your blood sugar.” I stumble to the kitchen to prick my finger and get my BG (Blood Glucose) reading and wait to make a multitude of decisions. If I am low, I berate myself for not waking up in the middle of the night to catch it, then shakily reach into the fridge for juice and try not to over treat my low thus spiking my BGs way too high (which is difficult because when experiencing a low blood sugar, you feel like you’re starving). If I am high, I berate myself for not waking up in the middle of the night to test and take more insulin, then I try to calculate how much insulin I should take to bring down the high without going low (having high blood sugars also gives you an insatiable hunger). I live on a seesaw; constantly trying to find the ideal balance of food, insulin injections and daily life factors that continuously challenge my attempts for good diabetes management. On a good morning, taking care of my diabetes only takes five extra minutes compared to another 30-year-old woman getting ready for her busy day. On other days taking care of my diabetes demands so much of my physical and emotional energy, I feel like I have nothing left that is just “mine.”
Like every other person living with T1D (Type 1 Diabetes), my head is constantly juggling the numbers, the food, the schedules, the planning, the doctors visits and the unexpected highs and lows. This disease is managed by control, self discipline and by knowing the nutritional facts of every single thing I eat.
As a teenager, I remember reading many articles and books that gave a daunting account of weight gain associated with insulin resistance and diabetes. It was during this time that I felt the first stirring of resentment towards my T1D. I felt it was a cruel joke to have such a passion for dance and performing and to have to constantly “take it easy” due to low blood sugars, or worry that I would have one when I was on stage. In an attempt to fight my anxiety over having a low blood sugar when something important was happening and to defy the research that told me I was doomed to be overweight, I started to omit my insulin.
Skipping my insulin soon became second nature to me and I went on for years to struggle with the cycles of omitting insulin, bingeing, restricting and swearing never to do it again. For ten years I felt alone, ashamed and completely hopeless. I knew what I was doing was wrong, and even when I wanted to stop, I didn’t know how to. I had forgotten how to take care of myself. I had lost all of my passion and my joy and all I had left was an all-consuming eating disorder.
It took every ounce of bravery I had to ask for help. When I finally sought inpatient treatment for my eating disorder I was lucky enough to be at one of the very few treatment centers in the US that has a fully developed program devoted to T1Ds with eating disorders. Recovering from my eating disorder was the hardest thing I’ve ever done, however the silver lining to the demanding work of recovery is that it’s led me to my true calling; helping other T1Ds find the support, empathy, and resources that they need to live fully again.
When I founded We Are Diabetes in early 2012 my intent was to provide not only important information on the eating disorders in T1D community (which studies suggest affect more than 30% of type 1 diabetics), but to also create a safe place for all T1Ds who feel misunderstood, alone, or burned out. We need more awareness, empathy and support for those who struggle with the exhausting daily care that living with T1D requires. The constant focus on food, weight and numbers that play a powerful role in this disease can sometimes blur the lines between healthy control and overwhelming obsession. To date, We Are Diabetes has helped hundreds of T1Ds find their path to a life free from an eating disorder and has provided friendship and comfort to those who felt alone.
For ten years I struggled to distinguish where the chronic illness ends and the woman begins. For ten years I felt alone in a way that I thought so few could ever understand. Unfortunately, there are countless other type 1 diabetics who understand all too well. This is where my dedication to helping others recover begins. This is why We Are Diabetes exists.
VISIT: We Are Diabetes is an organization primarily devoted to promoting support and awareness for type 1 diabetics who suffer from eating disorders. We are dedicated to providing guidance, hope and resources to those who may be struggling, as well as to their families and loved ones.
LISTEN NOW: ‘Phantom of the Okra’ Diabetes Mystery podcast featuring We Are Diabetes Founder, Asha Brown, Actor and Author Peter Arpesella, Best-Selling Author Tonya Kappes, Mama Rose Marie, Poet Lorraine Brooks and Max ‘Mr. Divabetic’ Szadek.
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