Twice a year, a group of people from around the country go to Capitol Hill in Washington, D.C. to meet with their elected officials to educate them on the prevalence of eating disorders, the impact on millions of Americans, and how policy change is needed to address this. The Emily Program Foundation provides scholarships to help people travel to D.C. to tell their stories, to join their voices together in advocating for change.
I went along this time to tell my story. My story is about the need for more education among our medical professionals. My doctor (who is a fabulous doctor, well-read, current on research) watched me nearly double my body weight over the course of a few years and never once suggested there might be anything going on besides a weight problem. He missed my eating disorder for 15 years. It slowly dawned on me how very twisted my thoughts were around food and my body, but I had to come to that realization on my own and so I walked myself into an eating disorder clinic to ask for an assessment. I was 39 years old before that happened, and I have wondered repeatedly over the past six years how my life might have been different if I had been diagnosed at age 24 when I started to go off the rails.
I got home from DC yesterday and went to my eating disorder group last night. I was telling them about my trip and what an empowering experience it was to tell my story. I talked about how one of the hallmarks of our disease is that we feel wrong. Our bodies are wrong, our very being is wrong, to the point where we will starve ourselves or eat ourselves to death to try to make those feelings of wrongness go away. The problem is, we can’t selectively dull feelings, and so we end up numbing ourselves to the good that life has to offer as well.
It turns out that despite the best numbing efforts our eating disorders provide, those feelings of wrongness are pervasive, and we walk through life believing that we are just wrong, that we are a mistake. And even when we get treatment, we are still wrong; there is something wrong with us that our wonderful, caring treatment providers are trying to fix. And these everyday heroes help us realize that, while there are things wrong with us, they aren’t necessarily the things we thought were wrong. And they help us learn to feel again, both good and bad, but hopefully not wrong.
They and we work really hard on this, but years of feeling wrong can leave a residue that is hard to wipe away. But then, you come to Capitol Hill and you meet others from around the country—strong, intelligent, funny, interesting, creative, kind, snarky, successful, struggling, triumphant, AMAZING people who have eating disorders—and you start to think that maybe, just maybe, you’re not wrong in every way after all. You start to think that maybe you can take your place among them, with your head held high. You start to realize, as strange it sounds, that perhaps you like people with eating disorders just a little bit more, find them more interesting and just a little cooler, than the average Joe. And what might that mean about you? Could you be OK the way you are, too?
And you get your first inkling, the first tiny fluttering in the back of your mind, that maybe you wouldn’t change things if you could. Now, you’re not there yet. Things are still too hard, and the pain of your eating disorder too fresh, but you can actually envision yourself getting to the point where you like yourself, and your life, enough that you don’t think you’d change the past if you could, because it’s what made you who you are today. But that doesn’t mean you wouldn’t change the future for those who come after you, and that’s why you’re here today.
And when you meet the congresspeople, and you talk about the many things that are wrong in our society that contribute to this problem—the under-educated medical professionals and school personnel who miss the early signs; the doctors who tell a mom her son can’t have an eating disorder because he’s a boy; the coaches who call healthy athletes “fat and slow” and put them on diets; the advertisers who feed us a constant diet of digitally-altered images, so that models don’t even look like models anymore; the insurance companies who say things like “we’ll pay for the sick, skinny ones, but not the fatties” or that use physical health criteria to decide what level of MENTAL health care a person needs—then you start to realize that maybe it’s not just YOU who are wrong, like you thought for so many years, but perhaps there’s a lot that is wrong OUTSIDE of you, with our system and our society.
I was telling all of this to my group last night, and I got choked up about it. One of my fellow group members said, “But didn’t you go on this trip last year?” And I said, yes, and it was good, but not like this. And she said, “What’s different?” I said something about last year being about trying to find my way around and logistics and I had a blister from wearing the wrong shoes. The group therapist just looked at me with a soft smile and said, “And this year, you have a thing called feelings.”
It’s taken me a lot of years of treatment and a recent breakthrough to have a thing called feelings. I’m just grateful that I got to not only attend the Eating Disorder Coalition’s Lobby Day, but that I was able to actually experience it, and that we can help others have similar experiences. Lobby Day is about coming together to end the isolation, stepping out of the shame and into the light, and telling our stories to compel others to help right the wrongs, the wrongs that are not us, but are outside of us.
Billie Gray is the Executive Director of The Emily Program Foundation. She first became involved with the Foundation as a volunteer and chair of the Foundation’s Program Development Committee. She is committed to promoting healthy relationships with food and positive body image, helping people receive the right level of treatment sooner, and addressing risk factors that lead to eating disorder development.