Monday, April 20, 2015

Deart ICED: She had to leave her own country to get Eating Disorder Treatment!

Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!

She had to leave her own country to get Eating Disorder Treatment! 
Ontario, Canada

My name is Kelly.  My Eating Disorder (ED) began at the ripe age of six and slowly inscribed its way into my everyday life, and by the time I was a teenager it seemed like it was innate behaviours. My family never paid much attention to the way I would manipulate my food because it had been a part of my life for so long–they always just assumed I was a “picky eater.”

I finished high school and moved away for University. My first year of University was the benchmark for freedom to do what I wanted and essentially become engulfed with my ED. My Eating Disorder was never about wanting to lose weight, or wanting to be skinny, that was only a side effect of a much bigger struggle with anxiety and obsessive-compulsive perfectionism.

Life with my Eating Disorder raged on and regretfully I had to drop out of school; I attempted to recover once, but was kicked out of the residential program before I had a chance to really make the progress that necessary for full recovery.

I moved back home following my discharge and the next year I started my Bachelors of Science in Registered Nursing program. This was the catalyst to the worse years of my life. School is very anxiety-provoking and stress is something I had never learned how to cope with.

By the second year of the program, I was totally lost in my Eating Disorder, but somehow managed to maintain high grades and show up to class. The coordinator of my program was the first person to sit down with me and tell me that she thought I had a problem, as she had watched me deteriorate over the prior year and a half. I finally confided in her my deepest struggle.

At the same time, I was seeing the best doctor in the city for Eating Disorders. Doctor S would see me once a week, and this continued for several months. She encouraged me to seek residential treatment again, as I was in the hospital 2-3 times a week receiving fluids and potassium (note: many individuals with Eating Disorders die of cardiac arrest). My body was slowly failing, it would take 5-7 hours for my body to handle the liter of fluids because my heart rate would sky rocket due to the change in my fluid status.

Finally, I decided it was time for treatment because Dr. S told me that I didn’t have much longer before my heart would give out. When I called Credit Valley to find out admission criteria I was told I needed to have a BMI of less than 15 to be considered (Note: this is like requiring people to have Stage IV cancer before being treated).

So I decided to lose more weight in order to get admitted, just to have to turn around and put it back on as part of treatment. However, Dr. S wanted me to get into treatment as soon as possible. We decided to see if I could get out of country coverage. The process was extensive, and our first denial came quickly. We were told that, since Dr. S is not a psychiatrist that specializes in Eating Disorders, I wouldn’t be considered. We appealed it and informed them Dr. S is the only Physician from my city who manages Eating Disorder patients. They denied us again. We appealed it, and with that sent in a letter from the coordinator of my program explaining my deterioration over the year and how desperately I needed this care.

During this time I had multiple visits to the ER, a serious physical decline and my weight was dropping. When I finally was under a BMI of 15, I was told the waitlist for a bed at Credit Valley or TGH would be 10-12 months. I would not survive that long.

We waited to hear from OHIP and were denied again. They told me that I would need to travel to Toronto once a week for three months to build a rapport with Dr. W and that he can fill out the paper work after the three months. Infuriated, Dr. S knew I could not physically make the drive there and back and what an unreasonable expectation that was.

With our final appeal, seven psychiatrists across my city wrote on Dr. S’ behalf explaining that when they have patients with Eating Disorders they send them to her because she is the only doctor who knows what to do. OHIP finally approved my request.

I left for Rogers Memorial Hospital in May of 2012. Three days after my admission to the residential home, I suffered a heart attack. Thankfully, I was where I was when it happened and received timely adequate help and support. I stayed in residential treatment until November 2012.

I was the first person from Ontario to be covered for a five-week step down day program to ensure that my transition out of residential would not result in a relapse, and had I come home after my discharge there would be no adequate care.

I am now two-and-a-half years into full recovery, 26 years old and just graduated with my Bachelors of Science in Registered Nursing. Every time I revisit my experience with Canadian resources I am left feeling disappointed and heartbroken.

I should not have had to leave my own country to get what I needed. I should not have had to wait until I was days from a heart attack to get what I needed. I should not have had to fight so hard to get the coverage for the treatment. This system needs to change and the change needs to start now.

1 comment :

  1. I can totally relate to your struggle. I am from BC and I have been trying to get funding for 3 years. The ministry of health clearly does not want to fund and continually puts new barriers in front of me. They have asked for me to provide peer-approved medical journal articles showing that treatment in the states would result in a positive outcome - of course those kind of articles don't exist. Finally the head of the provincial program for EDs in BC has written a letter supporting my application (I have been a patient with them for 20 years) but I have yet to hear anything. We need more programs that offer treatment that is different from the basic hospital programs. You can't force a square peg in a round hole. I have felt for many years like I have to try to change who I am to be in a program and it isn't working in terms of recovery.