I have diabetes AND a mental illness.
How do you say something so personal? How do you come out and announce something that has been so stigmatized in our culture? I guess you just get the courage one day to say enough is enough and I will not buy into what our culture has to say about being shamed into the stigma that having a mental illness has in our country. And/or you decide to do a media interview without thinking that the story could go nationwide (more on that later). So let me just come out and say it…I have a mental illness.
I didn’t cause it, I didn’t invite it. I couldn’t have stopped it. It happened.
It all started when I was 12 years old. My eating disorder started around then as well as struggling with anxiety and depression. It was my secret though and stayed that way for a long time. I justified the behaviors in my head. I was a competitive figure skater and my weight was an issue. I just wasn’t naturally thin. I criticized everything about my body. I couldn’t think of one nice thing to say about myself.
Then a year later I was diagnosed with type-1 diabetes where I was told that after the initial weight loss that I had before diagnosis I would be gaining all that weight back when I started on the insulin regime that was required to stay alive...it was going to now be my life support. I was at the formative age of 13. Though I have never manipulated my insulin and had an abnormally high A1c, I have limited my insulin so that I limited the amount of food that I would eat each day. Eating was something that I could control in a life of mine that often felt so out of control. In living with diabetes you deal with the dreaded “food police” on a weekly basis. It’s a struggle to respond to the food police. “Are you sure you should be eating that cookie?” I’ve finally figured out how to answer. “I’m sorry. Is it yours?” But living with diabetes is very difficult. People will come up and say to me, “You’re not that overweight, how did you get diabetes?” Or “Did your parents feed you too much candy as a kid?” I struggled with low self-esteem and some days I wasn’t strong enough to give the educated answer back because I had such a low self worth of myself.
My seemingly perfect life to the outsiders started to unravel and I was starting to lose my grip. Though I was fully functioning and achieving I would say I was I was joylessly striving through life. Any goal I hit was not good enough. Any amount of weight I lost was never thin enough. With an eating disorder it really isn’t about the weight, though some people perceive it is. It’s truly that your brain thinks in a distorted way.
I was 24 and at a regular check-up by a physician when they diagnosed me with an eating disorder and asked me to check in to an inpatient treatment facility to get the help that I desperately needed. I was shocked that someone had finally confronted me about my behaviors. That day she diagnosed me with bulimia. What I will say is my journey to recovery has been long. I’ve spent the last 3 years of my life in and out of treatment facilities all across the country. I have had to give up a lot. My former life seems a distant memory of mine. I’ve clung on to the people around me who I trust and love the most. They’ve been by my side through each hospitalization and each triumph. I had to realize life simply couldn’t be done on your own. The sooner I learned that lesson, the better. Humans need other humans to live. And boy did I.
I never sought out to be an eating disorder advocate. I’ve always been very comfortable in my role of speaking about diabetes. But my frustration has grown with two things: 1. in how our country perceives mental illness and 2. that I don’t think eating disorders in people with diabetes are being spoken about nearly enough.
During my year as the youth spokesman for the American Diabetes Association and the years after, I never heard anyone talk about eating disorders among diabetics. I attended conferences across the country, listened to top diabetes researchers and kept up on the latest trends. Not once did I ever hear anything about the connection between diabetes and eating disorders. Then I read a fascinating article in the Journal of Psychosomatic Research from 2002 titled “Eating Disorders in Young Women with type 1 Diabetes Mellitus.” The article concludes, “The prevalence rates of eating disorders amongst adolescent and young adult woman with diabetes are twice as high as in their non-diabetic peers.” It gave me a lot to think about.
That’s why this last weekend I flew out to Washington, DC on a scholarship to attend the National Eating Disorder Association’s (NEDA) Conference to learn more about the eating disorder side of things to better educate myself. I’m still new in my recovery. I’m so blessed that I have one year and a couple weeks of recovery under my belt and am in a place of peace to have the ability to talk about what I’ve been through.
I believe their needs to be an open dialogue here in the diabetes community about the high prevalence of eating disorders. Will you join me in having this conversation? Can we together take the stigma off of viewing a mental illness as a choice, rather as a serious brain chemical makeup disease?
I believe secrets are what make us sick. As God has taught me, “The truth will set you free”. We need to have an open and accepting dialogue in our country and in our diabetes community. Will you join me?
P.S. The interview that I gave to a reporter two months ago that I referenced in my intro paragraph...First of all, I never thought would go as big as it has (and it only came out on Friday!). The story has already been picked up in the Philadelphia and Austin markets. My stance in the article is I strongly disagree that health insurance companies can choose to NOT pay for your mental health treatment without ever seeing or speaking to you the patient. My frustration grew and I'm in the middle of a federal lawsuit against my former health insurance company. You can read more at the link below. The article was written because last week was Mental Health Awareness Week.