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Happy NEDA week, everyone! This week – February 23 to March, 1 2014 – is National Eating Disorders Awareness week and I’ll admit that I wasn’t going to post about it at first. Mostly because I feel like I write so much about eating disorders on this blog that it’s kind of NEDA all the time here. I’ve had eating disorders for decades, they’ve been with me for more of my life than not, and I’ve been very public about my struggles with them and my continuing recovery. My archives are full of posts about how I developed my EDs, what kinds I’ve had, what treatments I’ve been through, what setbacks I’ve had, my body image and endless posts about what I’ve learned. I didn’t think I had anything left to say on the subject, frankly.
And then two things happened:
First, I got assigned to write a story for Greatist about tips from people recovering from eating disorders. Basically I asked them what they know now that they wish they knew then. The responses I’ve gotten have been some of the most beautiful stories I’ve ever heard and I’ve been so moved by the courage, faith, tenacity and humor of these survivors. People are amazing. (Plus, I did my first-ever interview with a woman in labor with her first baby. I kept telling her we could do the interview another time or even cancel it and I could find another source but she insisted she wanted her story told. She said she wasn’t worried and wasn’t in any pain yet. I told her to enjoy that feeling as it would be the last time she would be pain- and worry- free for the next 18 years. In hindsight, 18 years was probably too optimistic.)
Second, a friend tagged me on Facebook on a sensationalist news story about the “frightening new trends” in eating disorders. As I read through the story and then the comments, I became furious at the way all these people were talking about eating disorders and the millions of people – myself included – who fight them on a daily basis. I read the comments and thought of all the amazing people I’d just interviewed and I just wanted to scream. But as the anger died down, I realized that this story and the accompanying comments are a perfect capsule of all the different messed-up ways people talks about EDs. So I figured that this is as good a time as any to start a discussion about how to kindly and appropriately talk about this subject. (And I’m not claiming to be perfect myself nor have all the answers!)
Fail #1: The new trends angle
(You may have to click through to see all the pictures- for some reason they aren’t showing up in some readers)
Let’s just start with the news story itself! First, I’d like to say that all types of EDs are “frightening” – fear is the very bedrock of an eating disorder. And it’s not just fear of being fat. It’s fear of losing control, of being unloveable, of being seen as worthless in a society that prizes beauty above all else, of not being good enough, of disappointing people and above all, it’s fear of oneself. The first thing someone with an eating disorder learns is that they – their body – cannot be trusted. They can’t trust their body to know what it needs, they can’t trust it to stop eating or start eating, they can’t trust it not to betray them. And because they can’t trust themselves they come up with all these rules to keep their unruly body in line, even if those rules canl ultimately kill them.
But what I really hate about this is that they’re trying to make it novel with this talk of new trends. EDs aren’t new. The basics of bingeing, purging and starving have been with us probably about as long as people have been in societies. People may come up with new methods of accomplishing those three things but in my experience highlighting these new techniques only serve to shock people who don’t have an eating disorder and tutor the rest of us who do. Both of those things suck. I’m not saying we can’t talk about the ways people harm themselves but let’s stop treating ED sufferers like a freak show.
Fail #2: “You’re just crazy.”
Dismissing someone with a mental health disorder as “crazy” is not only rude, it’s harmful. It means that you don’t care enough to try and understand them or what their experience is and in addition, you find it so outside the range of “normal” that you don’t think it even warrants discussion. You can’t help anyone if you short-circuit the discussion by relegating them to a group which is defined as being “outside of reason.” Also, eating disorders are many things – cruel, vicious, mean, manipulative – but they’re not senseless. In fact, the more you talk to people about how they developed their ED, the more you see that it makes a lot of sense how they ended up where they are. It doesn’t mean it was the best choice in the situation but it wasn’t an irrational one.
Plus, let us all remember that we each have our own personal brand of “crazy” and if yours happens to not be of the ED variety then be grateful. I’m sure you have other issues. We all do. It’s part of being human.
Fail #3: “Your problem is dumb because other people in the world have worse problems.”
It is true that an eating disorder can seem like the very epitome of a first-world problem. Oh we have SO MUCH delicious food, we can’t STOP EATING, wah, wah. And I agree that other people in the world have worse problems – something that is worth remembering. We could all do better with some perspective. But pain is not a zero sum game. Just because someone else has more doesn’t mean mine is less nor does my suffering more cause someone else to suffer less. Pain is pain. We all hurt. Some of us hurt much worse than others, a fact that if we could truly grasp the enormity of would bring us all to our knees in horror.
I wish, with all my heart, that people weren’t starving anywhere in the world. But I also wish, with all my heart, that people weren’t suffering from mental illness. You can hold the two thoughts at the same time in your heart without one taking away from the other. Instead of using this argument to attack someone else’s experience, we should use it to greater empathize with one another and find ways to help anyone who is hurting, regardless of why.
(Also: Not to be picky but when someone else starves you that is not an eating disorder. That is torture.)
Fail #4: “It’s easier to make fun of you than it is to listen to you.”
I enjoy a good pun as much as the next geeky girl and I’ll even admit to finding some eating disorder jokes really funny (and inappropriate. and hilarious). There is definitely a place for humor in talking about mental illness – something I definitely take (too much?) advantage of on this blog. But this dismissive kind of humor isn’t funny, isn’t helpful and really isn’t all that clever. It’s not that I find this to be particularly offensive – I don’t – but rather eye-rollingly distracting from the real discussion. I’m totally fine with you telling me that you cannot understand the mentality that led me to starve myself. In fact, I’m glad you don’t get it! But don’t intentionally misunderstand the situation by feigning idiocy or I might take you at your word. Pardon me, but your ignorance is showing.
Fail #5: “Let’s change the discussion to my problem.”
GMOs and pesticides and all the other crap we do to food is a real problem and one we should all be discussing more. But let’s not hijack the discussion of one group’s issues to talk about yours. Also, I don’t know if the commenter meant it this way, but while ED sufferers may say they don’t like a food for a particular reason, that’s often a smokescreen for their real issue – fear. I’ve heard people with EDs use all kinds of excuses not to eat something -GMOs, pesticides, the color purple, if it’s been cooked, if it contains animal products, how much fat/carbs/sugar it has, the hygiene of the handler and even that it doesn’t match the day of the week it’s being served on – but in the end it’s never really about the food. So no, taking out GMOs and pesticides would not cure all eati