According to the National Eating Disorders Association, 20 million women and 10 million men in the United States have had a clinically significant eating disorder at some time in their lives. These disorders are real — not a fad, not a lifestyle choice — and are about so much more than being thin, despite what many think.

To learn more, we partnered up with the National Eating Disorders Association to see what people who live with eating disorders wish others understood.

Here’s what they had to say: 

1. “You can’t ‘just eat.’ The world inside your head is so twisted and controlling, a prison of black and white; it makes you fear every aspect of your life outside of your ‘control.’”

eating disorder quotes: you can't just eat

2. “Even if you appear ‘healthy,’ you may not be… physically and emotionally. Eating disorders manifest in many ways.” 

3. “Recovery is long and hard. If I talk a lot about it, it’s because it affects every aspect of my life.”

4. “I wish people understood the loneliness.”

5. “While recovery is a choice, developing an eating disorder definitely is not.”

eating disorder quote: While recovery is a choice, developing an eating disorder definitely is not.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

6. “It never fully goes away; it lingers in the darkest, deepest parts of your thoughts. It gets easier to deal with but will always be there.”

7. “I can’t just stop my eating disorder on the drop of a dime. Recovery involves changing my entire thought process and my views on food and my body.”

8. “Basic things like going to a family gathering, going out on a date and leaving the house spur of the moment are not that simple for someone with an eating disorder. I have to get over huge mental hurdles just to do simple things.”

9. “Weight restoration doesn’t mean you’ve beaten your eating disorder. It’s a struggle every day. There’s so much more to recovery than weight.” 

eating disorder quote: There's so much more to recovery than weight.

10. “I wish people understood just because I’m recovering doesn’t mean the eating disorder and underlying issues aren’t still there.”

11. “Restrictive eating disorders aren’t about wanting to be thin, and overeating, like with binge eating disorder, isn’t about not caring about your body and making poor choices.”

12. “They’re not all rooted in vanity.”

eating disorder quote: They're not all rooted in vanity.

 

13. “It’s a serious disease with life-threatening consequences.”

14. “When someone says, ‘You don’t look like you have an eating disorder,’ it’s extremely triggering.”

15. “Eating disorders don’t discriminate.”

16. “You don’t just wake up one morning and decide to stop eating.”

eating disorder quote: You don't just wake up one morning and decide to stop eating.

17. “I wish people realized how loud my eating disorder is.”

18. “Boys and men experience eating disorders, too.”

19. “You cannot look like ‘you have an eating disorder.’”

20. “An eating disorder is not a ‘phase’ or a goal. It’s a disease. End of story.”

eating disorder quote: An eating disorder is not a 'phase' or a goal. It's a disease. End of story.

21. “It’s our eating disorder that’s selfish, not us.”

22. “I wish people understood that eating disorders don’t just take over your eating habits; they dominate your entire life; every thought, every action.”

23. It’s not about the food or weight —  it’s deeper than that. We use the eating disorder to mask something underlying. This isn’t a choice or a lifestyle.”

25. “It’s not a glamour disorder. It’s a serious mental illness.”

eating disorder quote: It's not a glamour disorder. It's a serious mental illness.

26. “When I talk about my struggle with food it’s not for attention.”

27. “Things are not what they seem. Just because you’re eating doesn’t mean you’re ‘better.’ Just because you gained weight or you haven’t lost any weight doesn’t mean you don’t have an eating disorder. Just because you look ‘healthy’ doesn’t mean you don’t have an eating disorder.”

28. “No matter how far you are in recovery, little comments can still hurt.”

eating disorder quote: eating disorder quote: It's not a glamour disorder. It's a serious mental illness. 26. "When I talk about my struggle with food it's not for attention." 27. "Things are not what they seem. Just because you're eating doesn't mean you're 'better.' Just because you gained weight or you haven't lost any weight doesn't mean you don't have an eating disorder. Just because you look 'healthy' doesn't mean you don't have an eating disorder." 28. "No matter how far you are in recovery, little comments can still hurt.

29. “It’s not exclusively a teenage problem.”

30. “Food is the symptom, not the root, of the eating disorder. It’s all about the person’s psychological state of mind.”

31. “Everyone’s experience with an eating disorder is different.”

32. “You don’t have to be underweight to have an eating disorder.”

eating disorder quote: You don't have to be underweight to have an eating disorder.

33. “You honestly can’t see yourself the way others do.”

34. “Eating disorders are not diets gone wrong.”

35. “It hurts to hear, ‘I wish I had that kind of discipline.’”

36. “There’s nothing ‘lucky’ about being so thin.”

eating disorder quote: There's nothing lucky about being so thin.

37. “We wish we could be living our lives free. How I wish I could go out on a normal dinner date with my boyfriend or enjoy a holiday feast or a regular dinner with family.”

38. “Eating disorders can feel like a third wheel in your relationships/friendships.”

39. “‘Anorexic’ is not an adjective.”

40. “What you see on the outside is only the tip of the iceberg.”

eating disorder quote: What you see on the outside is only the tip of the iceberg.

*Some responses have been edited and shortened for brevity

40 Things People With Eating Disorders Wish Others Understood

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This summer, I was admitted to an inpatient facility for anorexia nervosa. I was there for 50 days, and over that time, I learned a lot about myself and about the illness. I’ve come to realize many people are not aware of the true reality of eating disorders.

Here are five myths about eating disorders I’d like to dispel:

1. Everyone with an eating disorder is thin.

At my treatment center, there were people of all shapes and sizes. Keep in mind, this was an inpatient facility (the highest level of care possible). You don’t have to be thin to have an eating disorder, and you certainly don’t have to be thin to be really sick. At any weight, your overall quality of life can be significantly impaired by eating disorder behaviors.

2. It’s as simple as “just eating.”

This is one of the worst things I’ve heard about eating disorders, and it stems from a lack of understanding about what a person with an eating disorder is thinking, feeling and dealing with. To someone without an eating disorder, eating comes easily — maybe you hardly even think about it. But to someone with an eating disorder, eating is ridiculously hard.

Take eating a cookie. In order to manage to even take a single bite, you have to fight through all the voices telling you that you have no right to enjoy the cookie, that it has too many calories and that you’re going to get fat. And even if you manage to eat the food, you have to deal with the incredible guilt that follows. It’s not as simple as “just eating.”

3. Eating disorders are glamorous.

A lot of people seem to believe that eating disorders — in particular, anorexia — are a quick, easy way to get thin. I’ve heard of individuals who wish they had the “willpower” and “strength” to have anorexia, because all they see is that anorexia means skinny. That couldn’t be further from the truth. Sure, you might be thin, but your heart’s a wreck, you’re freezing all the time, your hair is falling out, you can’t concentrate and in the process, you might have lost meaningful relationships. Not glamorous.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

4. Eating disorders are a choice.

A lot of people believe this myth. But current research is showing that eating disorders have a genetic component. While environment and societal factors do play a part — no one “chooses” to have an eating disorder. An eating disorder controls you, not the other way around.

5. There are only two eating disorders: anorexia and bulimia.

There are actually more types of eating disorders, including anorexia, bulimia, binge eating disorder and other specified feeding or eating disorder. While anorexia and bulimia are more well-known, all types can have life-threatening consequences.

At only 16, I have a disorder people are taught to be ashamed of. But anorexia, or any other eating disorder, isn’t something to keep quiet about. It’s an illness, just like any other, and the voices of those fighting it deserve to be heard.


The voice in my head, the voice of my eating disoder, degraded me in every aspect of my life. At school anything less than an A was moronic. In my social life no one really liked me, they just let me hang out with them. At the gym I was a fat pig who could never burn enough calories. At meals I didn’t even deserve to eat. The voice was so loud sometimes I wanted to curl into a ball and cover my ears. In the beginning I tried not to believe him, but my eating disorder continued to egg me on. “Don’t have the toast, have some coffee instead.” He was almost gentle and, I hate to admit it, encouraging. Soon my eating disorder had taken on a life of his own, and he was the only voice I listened to. He abused me emotionally, and I in turn abused myself physically. I was a shell of myself.

Although physically now I’m healthy, my eating disorder has never really left my head.  The volume of his voice waxes and wanes, but has never disappeared. It’s hard to explain what it’s like to have an eating disorder in my head and not in my body. Often I find myself overanalyzing my eating habits and “correcting” for errors like a sick game of checks and balances in which both the judge and jury are my eating disorder.

It was hard to imagine others could understand my position. For whatever reason, I’ve always thought everyone else was either recovered or not, and here I was in limbo. Somehow I thought I was the only person with an eating disorder who experienced these thoughts silently because her body didn’t show the monster in her mind. 

And then I found out that the woman at the gym — whose body I wanted, whose strength I wanted, whose endurance I wanted, whose commitment I wanted, whose size I wanted, whose agility I wanted — was also recovering from an eating disorder. The woman I hated for making life look so effortless, the woman who I constantly compared myself, she has an eating disorder in her head, too. Who knew? Everyone has their own invisible struggles. Even the people we put on a pedestal; a pedestal which distances us from their humanity.

And so when a mutual friend reached out and asked if she could connect the two of us because we had so much in common, and because the woman at the gym could use someone who understands, I said, “Yes.” At the very least it might help her know someone else lives in this tenuous limbo in which an eating disorder lurks, and that someone else has some of the same invisible struggles as she does.


Dear Body,

For everything I’ve put you through this year, I’m sorry.

For punishing you just for being you. For calling you weak just because you wanted to live. For starving you when I should have been nourishing you. For hating you when you needed love most. For feeling ashamed of you when you enjoyed food. For pushing you well beyond your limits and ignoring your pain. For neglecting you and expecting you to be OK. For giving you no other option but to start cannibalizing yourself just to survive. For believing I wasn’t really hurting you. I know you did your best to please the beast I was to you, and I want to thank you for keeping me alive, even when I didn’t think you deserved to live.

If I’d treated my children as I treated you, they would have been, rightfully, taken away.

I’m sorry that I have to learn to love you again. It will begin with respect and trust. Not on your part but on mine. I’m so sorry, little body, that I forgot what a miracle you are. You’re designed to work beautifully without my interference. I hope I can find the courage to just let you get on with it as I nourish you as best I can.

Little body, I hope we can be happy together. You deserve it.

Love and God bless,

Hannah

Screen Shot 2015-03-23 at 10.37.54 AM

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

This post originally appeared on Gloria Is Not Me.


Dear Eating Disorder,

In many ways, I still call you “dear.” You wrap yourself like a tangled ball of yarn around my brain. So tightly that it’s hard to tell the difference between you and myself. I didn’t ask for you to come into my life, and I’ve asked many times for you to leave.

This yarn gets untangled a bit in some places, only to be more tangled in others. You served to mellow out and uplift my spirit during the multiple depressions that scattered my younger years. You were there when no medication was available because it “wasn’t safe for children.”

And now, you’re an addiction. There isn’t enough research and treatment to fight you; you’re still seen as a petty, teenage fad. Oh, if only you were a fad! You’re a disease that overtakes the mind and 99 percent of my thought processes. You ravage the body. There’s nothing you don’t affect. My relationships, my schooling, my ability to work.

I will be 26 in a month. A decade will have passed since my family acknowledged there was a problem, since we first sought help. Likely around five years before is when you first crept in.

Perhaps there’s a life to be lived without a thought of you. Maybe I will be able to drink a glass of water and not feel like purging it. My logical brain is astounded at the things I catch myself doing right now. Maybe I will be able to work full-time doing what I love. I have hopes and always will because I’ve come so very far.

But I simply can’t live a life without thinking of you. Because you’ve transformed me in ways I never could have imagined. The destruction you’ve done is surpassed by the lessons I’ve been taught.

Humility. Patience. Gratitude. Living like it’s your last day on earth. Hope. Joy. So many things to list.

You’re an ugly creature, but I’m thankful for you. You most certainly are not a “teenage girl’s disease”– you’re a force to be reckoned with. But you’ve proven that even more so, I am the force to be reckoned with.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.


I’m sitting in Starbucks on a rainy Friday morning, sipping my coffee between classes. It’s been a long week, I’ve barely slept in days, and I feel the anxiety start to creep in. Free time: what do I do with it? Finish the assigned reading for my next class? Review for my midterm in two hours? Eat my morning snack? What do I even want to eat? I shouldn’t eat. Eating is a waste of time. I should study. But what should I study? I can’t even focus. Eating would help with that. I don’t care; I’m not eating this snack. I’m exhausted and overwhelmed. I just want to go home, get back into bed and cry.

Instead, I sit quietly, sipping my coffee. Slowly. I don’t like moving slowly. Slow means lazy. Lazy means not enough. I’m not good enough. I’m skipping a snack. How long before this is daily again? How long before I’m back in the hospital? I should be studying. I’m not doing enough. I’m only taking 12 hours. I’m not going to graduate on time. I’m not studying. I am going to fail. 

STOP. 

Breathe. It’s OK. You’re in Starbucks. It’s raining. It’s March 6th.

It’s March 6th. Last year on March 6th I came home for spring break. I came home, and instead of returning to college, I was admitted to a residential eating disorder treatment center. It’s March 6th and last year on March 6th I was crying on the flight home, appalled that I’d spent the past two weeks in bed. I skipped classes and exams and watched paper due dates fly by. I hid from the world, too scared to even attempt these tasks. Too scared to face my life.

It’s been a year. It’s March 6th and I’m sitting in Starbucks sipping coffee between classes. Today I’m taking two midterms, turning in a paper and then going on a sorority retreat for the weekend. It’s been a long week: This week I laughed and I cried. I argued with my nutritionist even though I knew she was right. I shut down and dissociated when my therapist pushed a little too hard. I had a panic attack on Tuesday night.

MIGHTY PARTNER RESOURCES

If you or someone you know has an eating disorder, call the National Eating Disorders Association helpline: 800-931-2237.

But this week I also studied, and wrote, and ate my full meal plan. I went to mixers and took study breaks to joke around with my sisters. I went to a bookstore just because. I worked a few hours at a job I like with people I love and asked someone to cover a shift for me because I knew I needed the time for self care. I skipped a few workouts because I just didn’t have enough time or energy to do them. I’m working on accepting the fact that my GPA this semester probably won’t be my best, and that’s OK. It’s all going to be OK

It’s Friday morning. I’m back at school. I’m not in a hospital. It’s raining. It’s March 6th. I’m sitting in Starbucks sipping coffee. Slowly. I’m learning to engage in my life. I’m doing things I’ve never done before. I have bad days. I have better days. I’m practicing balance. I’m making progress. I’m recovering.

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