THE BLOG
08/27/2014 05:27 pm ET Updated Dec 06, 2017

'Eating Disorder' Doesn't Just Mean Anorexia or Bulimia: I Have EDNOS

By Grace Kemeny

I'm Grace, and I have EDNOS. Maybe you haven't heard of it. EDNOS stands for "Eating Disorder Not Otherwise Specified," and according to the National Association of Anorexia Nervosa and Associated Disorders (ANAD), it's the most commonly diagnosed eating disorder of all.

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I don't meet the criteria for anorexia or bulimia. I've never gone a whole day without eating, or been able to make myself throw up after a meal. And sometimes it even feels like I'm not allowed to say I have an eating disorder, because my belly never became distended from starvation and I never lost a tooth due to constant vomiting. But I know my eating disorder is real. It has controlled my thoughts for more than half my life.

Right now, the DSM's eating disorder category recognizes anorexia nervosa and bulimia nervosa, plus -- added to the new version of the psychiatrists' bible just last spring -- "binge eating." According to the National Alliance of Mental Illness, examples of EDNOS range all the way from regular binge eating to exhibiting all the traits of anorexia, but with a body weight still in the "normal" range.

Growing up, I never thought I'd have an eating disorder. I never thought I'd be an alcoholic, either. But now I'm in recovery for both. And I've come to realize that my alcoholism and my eating disorder are not so different -- but one big difference is that you can quit booze and drugs, but you can't quit food.

I first learned about anorexia and bulimia -- and those two only -- in sixth grade health class, via dramatic images of women with bones jutting through their skin. I remember thinking bulimia seemed like a waste of food and a risk to your front teeth. And anorexia seemed to require a willpower I could never muster.

The health teacher wrapped up the unit by playing us the Lifetime movie The Secret Life of Mary Margaret: Portrait of a Bulimic, starring an emaciated Calista Flockhart. Spoiler alert: Mary Margaret dies.

Aged 12, I didn't identify with the extreme behaviors of anorexia or bulimia. But my complicated relationship with food and body image had already begun. I was going through puberty. I no longer fit into clothing from the children's section.

So I created some dietary rules based on things I'd read in women's magazines and what I saw my mom do. I banned all fattening and sugary foods. But then I'd have moments of weakness where I stole cookies from the pantry or rode my bike to Dairy Queen to scarf ice cream in secret.

Before I was even a teenager, food had become my enemy and my obsession.

Various factors motivated my fear of fat: my thin mom, my dreams of being a movie star, my desperate need for attention from the opposite sex.

NADA says the psychological profiles of people with eating disorders often contain the following traits: "perfectionism, high self-expectations, competitiveness, hyperactivity, repetitive exercise routines, compulsiveness, drive, tendency toward depression, body image distortion and a pre-occupation with dieting."

Yep -- all of these describe me.

My weight has always Yo-yo'd dramatically. I'm 5′ 4′′ and throughout my adult life have oscillated between a size 10 and almost a size 0 -- which is where I am currently.

Up until recently, this was my basic pattern:

Step 1: Be Obsessively Healthy All Day and Don't Touch Any "Forbidden Foods"

Step 2: Overeat Dessert Alone at Night

Step 3: Weigh Myself the Next Morning

Step 4: Be Ashamed of Myself and Mercilessly Beat Myself Up

Step 5: Over-exercise

Step 6: Weigh Myself Again to See If Progress Has Been Made

Step 7: Repeat

When I graduated high school and started attending a theater school in New York City, my perfectionism, poor body image, and obsessive eating skyrocketed. It didn't help that I had to wear a leotard all day and was surrounded by super-talented performers.

Drugs and alcohol helped me relax around food and turn off the voices in my head that told me I could never be good enough. Or thin enough.

When I smoked pot, I could binge eat without guilt. When I drank, I felt skinny and beautiful.

By the time I "hit bottom" with drugs and alcohol, I was downing a bottle of cough medicine in the morning to get high and suppress my appetite until the evening. Then I would smoke a joint just to allow myself to eat dinner. Then I would drink.

I would wake up filled with regret, and sometimes half a dozen giant cookies from the night before. I would promise myself to never to do this again. Then I would break my promise the next night.

When I got sober, aged 21, my relationship with food did improve. I started to consume regular meals again instead of starving all day and binging at night. I met my boyfriend -- a "normie" who's never had a DSM-worthy illness -- and felt safe enough to finally allow myself to eat from the list of "forbidden foods" I made when I was 12. I had pancakes for the first time in years. I let myself indulge in Chinese food, pizza and ice cream.

But occasional indulgences turned into binges. Since I couldn't drink, I used food to unwind, reward myself, cope with feelings and have fun. If I had a bad day, I baked. If didn't get cast in a role I wanted, I ordered takeout. For a fun Saturday night, I suggested going out for Italian.

The negative voices crept back, berating me whenever I cleaned my plate or skipped a couple days of exercise. I sometimes hated my body so much I would cry. It's a self-obsessed, narcissistic thought process. But to be fair, society encourages it.

At my lowest point, I felt so powerless over my eating, I thought I might drink again, or even kill myself. "Eating disorders have the highest mortality rate of any mental illness," according to the American Journal of Psychiatry.

I get it.

At 2.5 years sober in Alcoholics Anonymous and one year into therapy, I was so desperate, I tried Overeaters Anonymous. But I couldn't find anyone in OA who was available to sponsor me, and I left after six weeks.

A new therapist helped me to realize that my eating issues mirrored my drinking and drug use. But despite this awareness, I wasn't making any permanent changes.

I was still bingeing, obsessing, over-exercising -- and plagued with guilt and self-loathing. I was "hitting bottom" with food. It was quieter than with drugs and alcohol, but just as painful.

I finally found surrender in the least likely of places: at the gym. During a complimentary personal training session, the trainer asked how I felt I was doing.

"Pretty good," I said.

"How do you feel in your body?" she asked

"Pretty crappy," I blurted out.

I started working with the trainer and she gave me a food and exercise plan that involved less intensive cardio, more weight lifting, and a meal plan that kept me full. This plan, along with therapy, helped me to finally break my unhealthy eating cycle. I lost 15 pounds. More importantly, I didn't think about food all the time.

But my eating habits and body image were still warped. Although I'd hit that "perfect" number, I didn't think I was thin enough. And though I usually stuck to my food plan, sometimes I'd let myself off the hook for one night and binge until I felt sick. As anyone with experience (or who has watched The Biggest Loser) can vouch, emotional eating is no joke.

The truth is, I still struggle. But, I'm happy to say that there are more good days than bad ones now. As they often say in AA, it's about "progress, not perfection."

I have made progress. If I'm stressed, I can take a bath or watch TV or chew gum rather than scarfing down half a batch of brownies. If I overeat one day, I go back to my "normal" schedule the next, rather than restrict and starve myself. If I feel uncomfortable at a party, I try to engage in conversation rather than stuff my face with hors d'oeuvres.

My food and body issues are a distraction -- a way of avoiding my life. Recently my therapist pointed out to me that if I let my EDNOS take control, I will always see myself as a failure. I wish I'd realized this years ago, but I feel lucky to have this awareness at all.

According to ANAD, "up to 24 million people of all ages and genders suffer from an eating disorder (anorexia, bulimia and binge eating disorder) in the US," but "only 1 in 10 men and women with eating disorders receive treatment."

I recently wrote about my eating disorder on my personal blog and was astonished by the feedback I received. Many women I always thought to be totally healthy shared their own struggles with food and body image. It made me realize how lucky I am to even know what I'm fighting against -- and to be armed with tools for keeping the cruel inner voices at bay.

Just by acknowledging that I'm an alcoholic with an eating disorder, I can make the right choices today.

Grace Kemeny is a pseudonym for an actress and writer based in New York City. She performs onstage regularly in the New York City area, and can also be seen on various cable TV shows. She lives with her boyfriend in Brooklyn and loves to eat dessert, lift weights and go to comic conventions.

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Need help? In the U.S., call 1-800-273-8255 for the National Suicide Prevention Lifeline.

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If you're struggling with an eating disorder, call the National Eating Disorder Association hotline at 1-800-931-2237.