Maris Degener

“I'm Better at Having an Eating Disorder Than You:” Thoughts on How We Speak About Eating Disorders

Maris Degener
“I'm Better at Having an Eating Disorder Than You:” Thoughts on How We Speak About Eating Disorders

I have a surprisingly unpopular opinion when it comes to talking about eating disorders (or at least, you’d think it’s unpopular looking at the online recovery space):

You don’t need to share the specifics of your disordered behavior to be honest about your journey.

And, I’d argue, it’s not helpful to.

Never have I shared how many calories I ate, how I exercised, or what my lowest weight was in my disorder. Have I been asked to? Dozens of times. Have I been tempted to in order to “prove” how disordered I was? Hell yes.

But I’ve always known it would not be helpful because of my own experiences consuming eating disorder “media.” In my disorder I watched every eating disorder movie, watched every weird reality show about it (even the ones you have to find on the weird part of YouTube), read every memoir, and poured over social media accounts. 

I remember specifically downloading Portia de Rossi’s memoir Unbearable Lightness in high school. I must have read it at least a dozen times, just pouring over the pages that contained such an intimate look into living life with an eating disorder. The vast majority of the book wasn’t about how de Rossi healed, it was about how she suffered at the hands of mental illness. She went into incredible detail about how many calories she ate, how she would purge the calories she did eat, and so on. And then, at the very end, we fast-forwarded through her recovery into happiness and health.

What this book became for me was not inspiration to find my way out of my internal chaos, but rather a bible on how to have an eating disorder that would make me just like the amazing Portia. I admire how honest she was about what she’s been through, to be certain. And I know that for many who have not gone through disordered eating, it opened their eyes to the reality of what’s sometimes painted as just “dieting” or “being vain.” But for someone in active disorder or just beginning their recovery, it won’t always come across as a healing tool. I’d even argue that in most cases, it could serve as the opposite.

I was addicted to consuming books and shows and movies like Unbearable Lightness that spent most of their time diving into disordered behavior and limited-if-any time talking about tangible steps towards recovery. I walked away with a game plan for my eating disorder each and every time; when someone shared, “I used to eat x calories and exercise x numbers a day and I ended up weighing x pounds,” my eating disorder didn’t go, “Oh how scary and awful,” it thought, “Oh, so that’s how I can do it!

Eating disorders are competitive by nature: extremely so. I spent a lot of my early days in recovery comparing my progress to other people’s, and the Internet made this accessible 24/7. Tumblr was a breeding ground of eating disorder blogs before it became big to share recovery stories on Instagram, and there you’d find pretty pictures of thin girls eating perfectly prepared and presented plates of food, writing about how little calories they used to eat, and talking about their slip-ups and triumphs in recovery in incredible detail. Some weren’t so recovery-focused, either, mostly focused on sharing how badly they didn’t want to recover, sharing pictures of them hooked up to EKG machines and with food tubes up their noses from the hospital, lamenting another trip back to sterile hell.

I compared my recovery to theirs in all sorts of ways: 

“She’s weight restored and looks skinnier than me.”

“She eats fear foods and makes it look easy and fun.”

“Her hair didn’t all fall out like mine did.”

“She weighed less than me when she was hospitalized.”

None of it was healthy, and none of it was helpful. Trying to mimic someone else’s recovery (or worse, negate my own progress by comparing it to someone else’s) isn’t in the spirit of what recovery is: healing, finding our own path, and coming home to the beauty that’s always been inside ourselves.

And now I open up my Instagram feed and see the same phenomenon playing out every single day across thousands of accounts. Huge, big-name influencers with hundreds of thousands of followers, now looked to as gleaming images of health, often reflect on their history with disordered eating with detailed specifics that make me cringe to think of how my past self would view them: exact calorie counts, exact workout regimens, exactly how much weight they lost doing it over exactly what period of time.

I can see the heart in what they’re trying to accomplish. For one, there’s a certain pressure to achieve “credibility” when it comes to talking about eating disorders, a certain belief that if we can prove just how sick we were, people will trust us more to speak on the topic. And for another, there’s a desire to connect with those who are seeking support in recovery, to show that we, too have dealt with the symptoms someone is currently facing.

But my worry is that in this desire to gain credibility and trust, we’re losing sight of the impact sharing these numbers can have on someone seeing the world through the lens of an eating disorder. And, perhaps more importantly, losing sight of the fact that we need to earn nothing and prove nothing in order to speak powerfully and effectively about healing from an eating disorder. Today I feel no need to share the specifics of my experience in this way in order to convey the realities of my illness. And if I’m honest, the times I’ve felt a need were entirely self-serving, my disorder’s desire to show just how rigid and self-disciplined they could be. 

All of this was on my mind when Laura approached me about making the film. I didn’t want to become the face of yet another documentary people just like me would pour over seeking out disordered habits they could put into their back pocket. I didn’t want another movie put out into the world that was 90% in-depth recordings of disordered behavior and then a quick turnaround at the end where I’m suddenly better (or, alternatively and like many other films, a note at the end about how I died and there’s no hope to speak of). I wanted to do exactly what I do here on my blog: speak about realities without unnecessary specifics, avoid anything that makes mental illness a competition, and always come back to healing.


And of course, I’ve spoken before of my troubled relationship with eating disorder news media. Not too long ago, a paper started floating around the Bay Area with my face on the cover and a headline that read in an almost-aggressive font, “ANOREXIA TO INSPIRATION.” I knew this article was coming out- it’s common during the festival circuit for a film for publicity publications like this to happen. And this paper actually did a story on me when I was still in high school, after the CNN article came out. It has a nice, small-town, “let’s celebrate our locals” vibe to it. 

But instead of feeling excitement or pride, I felt downright uncomfortable. I promised I would never exploit my eating disorder; I’d never let papers publish how much/little I ate or weighed or exercised, or share the more “scandalous” or “tabloid” details of my mental illness. And yet, here I was on the cover of a newspaper with a headline that toed the line a little too close to comfort for me.

When I read this headline, I internalize the idea that in order to be “inspirational” (read: worthy of love and acceptance), you need to completely separate yourself from the things that have challenged you.  That in order to be worthy, you need to erase your past. That those who are still in the thick of things, still working through mental illness, cannot be inspirations.

Here’s the thing: this headline didn’t say much about who I am today and what I’m still dealing with. I still go through bouts of depression and anxiety. I still work diligently to care for myself and my recovery. And just because I’m weight restored and don’t restrict my food like I used to, just because I don’t fit the stereotypical presentation of an “anorexic” anymore, isn’t what makes me an “inspiration” if that’s what you’d care to call me.

While this headline (and article) doesn’t share “specifics” of my disorder, I think it’s a shining example of the distances we still have to go to achieve a healthy universal dialogue around eating disorders. Even if you’re someone like me who writes about the trouble surrounding media and eating disorders, you can still unintentionally fall prey to it. All of us, even with the purest of intentions, can contribute to the toxic culture surrounding eating disorders, because we’ve been socialized to think and speak a certain way about them our entire lives.

I’ve tried speaking to some of the big-name influencers privately about trying on a new way of discussing eating disorders. None of them have been receptive, despite my best efforts, always saying that they want to be honest with their community, to not feel like they have to hide. I feel like this response misses my true message:

Keep being honest. Don’t hide your story. I’m not saying at all that you should lie or feel like you need to hide what you’ve been through. But consider sharing the realities without the specifics, consider speaking to the things people don’t already talk so openly about: the loss of relationships, the isolation, the panic, the shame. Consider separating from the numbers your disorder wants you to cling onto. 

And, most importantly, try on the idea of not putting out more “how-to guides” for disordered behavior into the world unintentionally by sharing these specifics. We don’t need any more of that, trust me on that one.