Reading about eating disorders triggers me.
It doesn’t make much sense. I’ve never had an eating disorder. I’ve never had a disordered relationship with food. That is, unless you count the times I forget to eat because I’m busy being a perfectionist (i.e. OCD ritualizing) on whatever project I’m enthralled in, or times like last week when I couldn’t express my emotions and ate a whole box of chocolates instead.
I don’t know why eating disorders strike such a nerve in me. Reading about them-although I want to learn and I’m very interested in eating disorders-I always end up painfully, heartwrenchingly, akin-to-my-darkest-bouts-of-depression sad. Like mourning for a loss I didn’t have.
Maybe it’s because I see myself in them.
I recognize wanting to please my disorder so much I was killing myself while trying to help myself. I recognize turning my back on doctors and reason because what’s in my head is much more convincing.
Tonight I read an article by someone who has an eating disorder. And they are not participating in Eating Disorder Awareness Week.
They’re what we in the advocacy community like to call, “in recovery.” Except, she disowns the word.
She speaks about her history with an eating disorder in the way that makes me depressed when reading books about it. In the way that makes me worried about her, and makes her friend worry too.
At one point she describes herself as, “ a food lover…who is resigned to also being kind-of non-actively eating disordered weird about food.” And this was when I started understanding her message. Earlier in that paragraph, she explains she’s not engaging in her disorder. She’s not doing the things that got her inpatient a decade ago. But the week prior she was asking her therapist why not eating is such a big deal. And in the midst of my shock, I knew what she meant.
I describe myself as “in recovery,” too. But, I still ask my therapist why it’s so bad to avoid things that make me anxious. I still argue with her about why I can’t (won’t) do exposures about certain fears. I still believe things that justify my obsessions. I still have moments where I feel I can’t not ritualize. I still have thoughts and fears I haven’t faced.
I still feel, especially in the past few months, like there’s no point in doing exposures. Whether I do a compulsion or an exposure, I still have OCD. I still have urges to preform embarrassing compulsions. I still have thoughts I don’t want.
Whether I practice therapy and treat myself well or not, I still have obsessive compulsive disorder.
That said, I like what our article’s protagonist says here:
I don’t identify as recovered because to do so would be lying. To be recovered would be to have been given an esophageal transplant, a heart transplant, a brain replacement.
Mental illness is a part of a sufferer’s brain and our way of thinking, whether we give into it or not. Obsessive compulsive disorder is, in simplest terms: An unhealthy reaction (compulsions) to a very normal thing (intrusive thoughts). For that reason, intrusive thoughts will always be there, so our tendency to get stuck on them will always be there.
I’m convinced people who say they’re “completely recovered” from OCD don’t not have OCD, they’ve just mastered not reacting in unhealthy ways. To the point that OCD does not bother them anymore.
I can’t get rid of this stain on my life, my past, and my brain. It’s not going anywhere. And I don’t know if I want it to.
My OCD is not me. But it is a part of me. It is a part of my past, and something God used to make me who I am today. And, if i may say so myself, I think I’m pretty great today.
Because of OCD, I have a blog, I have a YouTube channel, I’m speaking. I never used to speak up before I had OCD. Literally. Lately I’ve been joking I spoke in a language exclusively made up of shrugs! Because of OCD, I get to be this person I always wanted to be. In addition, I get to have the courage to do things I’ve always wanted to do.
It’s still part of me, though. OCD isn’t just my past. It’s my present and my future too. A friend on Facebook recently posted a poem I loved. The line that’s been stuck in my head since goes something like: They want to hear my story, as long as it’s wrapped in a bow.
(Edit: It’s actually “You can talk if you’re a spokesperson with your sorrows neatly packaged, unwrapped on cue.” And it was written by Melanie.)
It couldn’t be more true. People love hearing mental illness stories. People love hearing the lowly and sad spring from rock bottom to be the winner, the happy, the bold… the YouTuber.
People want an inspirational story to brighten their next 15 minutes.
That’s not what mental illness is like, though. People act like survivors of mental illness-those who can talk about it, that is-are showing them a scar nearly faded. Meanwhile, I’m showing you the open wound.
My mind still feels like a labyrinth sometimes.
And to deny that, to deny people like me, is doing a humongous disservice to the people who don’t see themselves as recovered. You’re not advocating for them.
The language of “body positivity” and “recovery,” as optimistic as it is, doesn’t leave room at the table for the vast spectrum of people whose eating disorders — in all their messy, vacillating, tentative particularities — don’t let them identify or want to identify as recovered, who don’t want to disavow the disorder that has shaped their relationships, their worldviews, their lives. —Original Article
And I’m not saying the author’s view is healthy. A lot of the behaviors she describes are definitely perpetuating her disorder; She should leave them behind.
However, sometimes recovery isn’t so black and white. It’s not a finish line you can cross, and when you do, the metaphorical bow is tied around your story and you’re allowed to share it to please the masses. Sometimes recovery looks very ambiguous. Sometimes it takes decades to recover. Sometimes recovery never completely comes.
As I said above, I’m not saying this person is right. She sounds very cynical in a way I would have previously opposed. I’m saying by ignoring her, by dancing around her viewpoint, we’re hurting the people who don’t identify as recovered or even in recovery. As well as the people, like myself, who feel like this on their bad days.
Previously, I might have argued that she’s not using the word right. Correct me if I’m wrong, but I think most advoates use the words “to recover” and “recovery,” to mean this messy process. However, what if we just got rid of the word altogether? What if we really discussed healing from a mental illness without using the words, “recovery,” “body positivity,” and other clichés I can’t remember right now, but have totally said, that sound sweet but aren’t the real experience.
I mean, if we didn’t say “in recovery,” we wouldn’t have to consistently correct the misconception that it’s easy.
As I say with many things, if we want to help people, we have to meet them where they’re at. Standing 10 feet above them and dropping therapy, a Bible, or a copy of the U.S. Constitution onto their heads isn’t going to change their minds.
Recovery is good. But please don’t leave those of us still in it behind.
The point of her article and why I’m writing my post is,
Given NEDA’s “It’s time to talk about it” campaign (#NEDAwareness), I hope that our cultural dialogue about this subject can leave room for people whose relationships with their eating disorders are marked not only by admission but ambiguity.
I can advocate with my open wound, and I’m going to.
(To the dismay of the masses!)