For NEDA Week...

As we're getting into February, I've once again been seeing lots of post on social media about National Eating Disorders Awareness Week (Feb. 22nd-28th) and while I don't mean to sound cynical, I really kind of wonder what people think their posts are going to accomplish, or what the week as a whole is supposed to accomplish. And I wonder if  any of my friends who participate in the walks and fundraisers each year have ever actually questioned what the National Eating Disorders Assosciation as an organization is really accomplishing.

It's made me think of the article I submitted to Huffington Post earlier this year on my own experience and thoughts on NEDA, and I've decided to share it on here.

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Having spent over 12 years struggling with an eating disorder, I had definitely heard of NEDA (The National Eating Disorders Association). I'd seen lots of girls with the “recovery” tattoos (the NEDA logo) and the social media posts advertising NEDA fundraising Walks. The hospital programs I had been treated at were decorated with NEDA posters about "loving your genes" and being "be-you-tiful.” However, I never had any personal contact with NEDA until June of 2013 when I was hospitalized at the ACUTE Center for Eating Disorders in Denver, Colorado.

This admission to ACUTE followed several months of denied access to the treatment that was necessary to keep me alive. (I had sought inpatient treatment earlier in the year, but was discharged after “using” my allotted 15 days of coverage.) I admitted to ACUTE on a Thursday in June at 58% of my ideal body weight. My liver was failing, and my glucose level hovered between 14-20 mg/dL (normal is 80-100). I was told that, had I not admitted when I did, I wouldn't have made it through the weekend. I could feel myself dying at that point - physically, mentally, emotionally - and it was terrifying. I didn't want to die, but, after months of trying, I knew that I couldn't save myself.

ACUTE is only a medical unit, used as a prerequisite to treatment when a patient is too medically compromised to participate in traditional inpatient programs. The plan upon my admission was for me to stabilize at ACUTE and step-down to an inpatient hospital with the hope that I’d be able to get more time approved by my insurance. Two weeks into my hospitalization, my case manager told me that I didn't have ANY inpatient days left for the year; unless they were able to help me find a scholarship, I would have to go home directly from ACUTE. I was told that this would buy me, at most, a few months to say goodbye to my family and loved ones, and that without further treatment, I would die.

I was encouraged to contact NEDA, who may have been able to provide me with resources to access treatment. I was terrified. The prospect of going home to die wasn't something I could really wrap my mind around, so I called their hotline.

I explained my situation and was told that they didn't offer treatment scholarships. It was explained to me that their funding went toward "promoting awareness" rather than funding treatment, "in hopes of creating a world in which eating disorders do not exist."  (To which I thought, “Well, it looks like you’re about to have a world with one less.”)

I was confused, as I had always assumed that NEDA fundraisers and walks went toward helping people with eating disorders, and curious: if they aren't helping people with eating disorders directly, where does all of this money go? I did some research and what I found made me feel sick to my stomach:

-Lighting up the Empire State Building green and blue for National Eating Disorders Awareness Week in February. (NEDAW)

-Bringing life-sized Barbie mannequins into schools to illustrate that, if Barbie were human, she would have to walk on all fours.

-Circulating articles such as, "10 Reasons to Date a Girl in Recovery from an Eating Disorder” (I really wish that I was kidding..)

-Posters with pictures of toilet bowls that read "How Many People Will We Lose on This Diet Each Year?”

"Research" on "What percentage of American women wear lipstick?" and "What percentage of American women have been on a diet?"

-Documentaries on Photoshop and the evils of the media.

I could go on...

What I didn't find, however, were any efforts being made to actually help anyone struggling with an eating disorder. And honestly nothing to raise any sort of true awareness as to what an eating disorder is or what the experience of having one is like.

For NEDAW (along with lighting up the empire state building), they put out an info-graphic titled "The War on Women's Bodies: The Media, Body Hatred, and Eating Disorders." There is enough worth discussing in the title alone, but as I looked through it I realized that most of the information it provided was beside the point.

The first point on the graphic: "98% of women are not as thin as fashion models." Great. Next: "The average American Woman is 5'4'' and weighs 165 pounds. The average Miss America winner is 5'7'' and weighs 112 pounds" It continued from there, “What percentage of girls and women think they are fat?”etc, etc,

Nowhere on the info-graphic did NEDA highlight the percentage of people who die because they can't access the care that they need,or the percentage of patients kicked out of treatment prematurely due to lack of insurance coverage, or what eating disorders are, how they differ from “diets” and how they ruin lives.

Eating disorders are not caused by Barbie. Or the media. Or however much Miss America weighs. If they were, we'd all have eating disorders. They are mental illnesses. I wasn't getting diet tips from Self magazine prior to my admission to ACUTE. I was locking myself in my bedroom for weeks on end because I was afraid of 'inhaling' the calories that I believed would be in the air if I was anywhere around food. And I truly could not have cared less as to how much Miss America weighed. To be honest, I wasn't really even that focused on how much I myself weighed. Because at the end of the day, that's not what eating disorders are about. My eating disorder was driven by an inability to live with myself, a need to get rid of who I was. And then eventually, I just got so sick that it wasn't driven by anything anymore and I was dying and terrified but too stuck to do anything about it.

I needed help. And unfortunately, help wasn't there.

I know that I'm not the only one. I know that there are thousands of other men, women, and children in situations similar to mine. And they're not getting help either. That isn't okay.

It isn't okay that people are dying because they aren't able to access the treatment they need, and meanwhile the National Eating Disorders Association is spending thousands to light up the empire state building ("lighting the way to recovery").

Something needs to change.

I did eventually get the help that I needed (I went home, relapsed, got a new insurance policy at the end of the year, and went back) I still had to leave early due to insurance cutting out, but I was able to stay long enough to really begin doing the work of recovery, and even though things are remain very difficult, I'm strong enough now to continue doing that work on my own. Part of that work has included finding (and using) my voice, and seeing it as one that matters, and that's what I'm doing here.