NEDA Week: Writing the Experience

One of the things that I have often noticed about those in the eating disorder community is that many of the people in it often have difficulties speaking or telling their experiences, and that often they are far more comfortable with writing as their chosen form of expression (art is also common). As I think about eating disorder awareness, I’m really struck by the ways in which we write down what it is to have an eating disorder, particularly those pieces we conveniently leave out.

In particular, writing is a very different medium from speaking in that we have a lot of time to edit and only put down carefully crafted words. Oftentimes stories change a great deal when they get written down: certain parts are deemed unimportant or not fit for mass consumption, some parts are changed as we retell and rewrite, and we feel the need to create a coherent narrative. Who wants to read a story that ends “I’m still living my life and things are much the same. I learned a few things but I haven’t learned all my lessons yet and I’m still working the way I was through the whole story”?

Even as many of us find it easier to write, coming clean about the experiences of an eating disorder is still incredibly difficult. While the stigma and stereotypes are slowly being eroded, very few people actually want to hear the nitty gritty details of being on the inside of an eating disorder. No one wants to know about the puke you get on all your clothes when you purge. No one wants to know about the bizarre digestive problems and the sheer boredom of anorexia. No one really wants to know all the horrible things you say to yourself when you’re on your own. It’s incredibly difficult to pin down how honest is honest enough but not oversharing, and perhaps even more it’s hard to know how to frame your experience.

Eating disorders are your life. For as long as you have one, it tends to define  you, to take up almost every minute of your day, to affect nearly every decision. Imagine trying to summarize your life for the last year, being honest and giving someone the best insight into what the internal experience is like. This is the experience of trying to write what it is to have an eating disorder. To write it is in its very essence to try to pin down an entire life, to cut some things out, to forget, to choose a focus that may not wholly encapsulate who you are and who you were.

It is impossible to ever be wholly honest when you choose to write a piece about an eating disorder. As hard as it is to describe each individual experience that makes up the moments of an eating disorder, it is literally impossible to ever explain all of them. So what does it mean then to try to write an eating disorder? How do we choose which pieces to leave out?

In part, you define what it is to have an eating disorder by the pieces you choose to write. But you also choose how you want the world to view eating disorders (because as a minority, each one of us of course has to speak for all of us). You decide how to humanize eating disorders. Writing the experience is not telling others what your life personally has been: it is giving others a template for how to understand others with eating disorders. This may seem like a lot of pressure, but unfortunately many people out there will only ever hear one story of eating disorders and it may be yours. Most of us who write our stories know on some level that we aren’t just telling a story, we’re creating a narrative for People With Eating Disorders. This is part of why it’s so hard.

I believe that we’ve reached a point in eating disorder awareness where it’s become really important for us to start telling the ugly pieces. We took the time to write the narratives that show we can be positive and hopeful, the narratives that inspire, the narratives that people can relate to. But now we have to write our difference. No one will be able to help us until we’re willing to show them how we are not like other people, how our minds function in terrible ways, how we can spend hours debating a single bite, the mundane and disgusting and stupid parts of having an eating disorder.

Stories like this: last week my boyfriend was horrifically sick. It was something flu-like. He couldn’t keep anything down, he was miserable, he couldn’t leave the house because there was stuff coming out of both ends…and I was jealous because I knew he would be losing weight and I couldn’t.

I want our narratives to be whole and complex because we are whole and complex.

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