What someone with an eating disorder wishes you knew

Editor’s Note: This story is part of an occasional series covering disordered eating and diet culture.

Getting diagnosed with an eating disorder happened by accident to Emily Boring.

She went to her university’s mental health office to talk about anxiety she was feeling, and through conversations learned that her behaviors with food were classified as an eating disorder, she said.

Now 27 and a graduate student at the Yale Divinity School in New Haven, Connecticut, her journey of recovery and relapse has taught her a lot about how to care for herself and others, she said.

During Eating Disorders Awareness Week in late February, Boring spoke to CNN about the misunderstanding, shame and stigma around eating disorders so they can be better understood.

This conversation has been edited and condensed for clarity.

CNN: What do you want people to know about disordered eating and eating disorders?

Emily Boring: I wish people knew that it is everywhere. The vast majority of people will experience some kind of disordered relationship to food in their bodies, simply because of the culture we live in.

What I would say first and foremost is disordered eating — and this also applies to formal eating disorders — don’t look a certain way. They affect everyone regardless of gender, race, ethnicity, age, socioeconomic status. Disordered eating and eating disorders do not come with a “thin” or underweight body.

CNN: How do you understand eating disorders and treatment?

Boring: Eating disorders are now classified as metabo-psychiatric illnesses — metabolism referring to the way the body processes energy, and then the psychiatric portion related to brain and behavior.

This has confirmed the experience of people with eating disorders. We for decades — and clinicians also — have noticed that eating disorders tend to be activated when someone falls into energy deficit or doesn’t take in enough calories to support their body.

Eating disorders are not shameful. They’re not a choice, and they’re not a failure. There’s still some lingering stigma around the thought that eating disorders are something that you choose. I would add on to that: if someone is on the precipice of realizing they have an eating disorder or receiving that diagnosis from someone else, I would stress the importance of early intervention. And I would say that the first step to recovery is finding a really good eating disorder team (including a) therapist, dietician and a doctor.

CNN: How should loved ones talk to people in recovery from eating disorders?

Boring: I do speak mostly from my own experience, but I’ve also mentored quite a few teenagers during this process. I’ve learned the hard way what isn’t helpful to say to them, and I’ve also been the recipient (of unhelpful comments).

To the extent that you can, avoid comments and actions that we associate with diet culture. Especially in this country, the way that we privilege fitness in popular culture is antithetical to recovery. Diet culture oftentimes hides beneath the banner of healthism — that’s basically the belief that there is a standard of fitness and able-bodiedness that everyone can attain if we just work hard.

There’s a whole body of literature — scientific literature showing that health and weight are not all causally related. So higher weight doesn’t necessarily equal poor health outcome.

CNN: What do you mean when you say not to use “the eating disorder’s own voice” to talk back to it?

Boring: Let’s say I show up in a doctor’s office, and I’m afraid of what’s happening to my body. I’m afraid I’m going to gain weight. And a clinician may say well meaningly, “Don’t worry, your body’s not going to change that much. Your weight doesn’t have to go higher.”

Regardless of the factualness of that statement or not, that’s just playing right into the eating disorder’s belief. It’s so easy to try to reassure (your loved one) using the eating disorder’s own language, and I found that that just really doesn’t work in the long run.

CNN: What are ways to talk to people without using the voice of the eating disorder?

Boring: Some questions that I encourage folks to ask themselves are things like, “Is what I’m about to say implying that some bodies are better than other bodies? Or that some foods have greater or lesser moral worth?” Also try to avoid mentioning anything with numbers, whether that is weight or calories or number of hours exercising per week.

Don’t assume someone’s inner state based on how they do or don’t look on the outside. As much as people can, step back and ask questions, instead of making an assumption.

An example: “I see that you’re improving in these behaviors, like we set the goal of last week. How’s that feeling to you? How was your mind reacting?” So that process of gentle inquiry rather than statements and assumptions is really key.

CNN: What do people need to know about relapse?

Boring: That it is not a failure, and that doesn’t have to lead you back to the worst of illness that you’ve ever experienced. You can catch it early, and you can turn things around.

What I wish that I had known about relapse is that it happens more quickly and more sudden and all consumingly than I thought.

If you’re someone who has the genes for an eating disorder — whether that’s anorexia, bulimia, binge-eating disorder, any (disease) on the spectrum — you’re probably always going to have to be careful and vigilant about maintaining nutrition, eating an abundance and variety of foods, insulating yourself from diet culture. Because it can happen fast — a few days of restriction, a few lost pounds and all of a sudden, you’re back fully in the eating disorder.

And I would also say that relapse is a learning opportunity. It doesn’t always feel like that in the moment, but the times that I’ve relapsed, I look back and I realized in each instance, I’ve discovered something about what recovery means to me.

I guess that’s just a way to say, be gentle with yourself and be open-minded that yes, relapse is a crisis, and you need to do everything you can to get out of it. But also, it’s not a failure and it’s not a sign that you’ll be struggling with this forever.

CNN: What have you learned about recovery?

Boring: When I first started recovering, people — mostly clinicians, but also on some of the books and blogs that I’d read from people who’ve recovered — frame recovery, mostly in terms of absence. When you’re recovered, you won’t have these troubling symptoms anymore, or you won’t spend so much time thinking about food in your body.

In reality, what it’s like to be recovered is completely about presence. It is an ability to be present to relationships around you to the things that you’re interested in. It’s also just a physical presence of awareness of your own body, ability to perceive sensations, ability to eventually listen to your body’s cues of hunger and fullness.

The eating disorder is completely gray, and it feels like I’m kind of dragging myself through the days. … When I’m recovered, the world comes back into color again.