17 People Describe What It's Like to Have an Eating Disorder

Editor’s note: If you live with an eating disorder, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “NEDA” to 741-741.

Unfortunately because of diet culture and bogus beauty standards, many people know what it’s like to look in the mirror and not like what they see. More than half of Americans say they want to lose weight. And while this disordered relationship with our food and self-image does affect people greatly, unless you have an eating disorder, it’s hard to imagine what it’s really like. Because an eating disorder is not solely about food or a pursuit to “look beautiful.” For those who have the mental illness, it can be so much more than that.

To find out what it’s really like to have an eating disorder, we teamed up with the National Eating Disorder Association and asked people to describe their experiences and hopefully spread a greater understanding of EDs.

Here’s what they had to say:

1. “It’s like being in an abusive relationship where one minute it’s spewing hateful thoughts about you and the next it’s apologetically promising that if you listen to what it says you will achieve happiness.” — Bethany R.

2. “Like fighting in an invisible argument every single second of every single day. Like having a little bully sitting on your shoulder all day, every day, criticizing every single thing you say, do, eat and think.” — Emily A.

3. “Living with an eating disorder feels like you’re constantly at war. Like your best friend who has helped you cope in the past is trying to kill you. Living with an eating disorder is not really living. It is like trying to take a breath in a smog-filled room, each breath feels like it is killing you.” — Denise J.

4. “Imagine someone living in your house who doesn’t have permission to be there and won’t leave. They sounded kind of helpful at first, but eventually started taking over. They tell you what you’re doing tonight, they tell you if you’re pretty enough to wear that dress or go out on that date, they take your debit card and shop for dinner and you don’t like what you’re now having. Imagine you try to get that person to leave and they bunker down. You, your family, your doctors tell them to leave and they don’t. They control you more. Those things you could do with their permission stop — you do nothing now. You’re alone with them. Eventually, they threaten you and brainwash you, and by the time you’re done, they have you convinced you can’t live without them. You defend them to your friends and family. You pick them over other real people. At some point, you have a brief moment of clarity and you let someone begin the long process of eviction. You learn to disagree with and disobey that person living in your house. You force them into a closet or a basement, and even though you hear them screaming, you can walk out your door for a while. Eventually, you realize they have gone, but the damage they left doesn’t disappear. You clean up what you can and cover up with paint and plaster. You move on and try to forget about that person who lived in your home, but they invade most of your memories, because they were so present for those important moments. You make new memories and you meet new people, but every time you hear a bump in the night, you secretly wonder if they’ve finally come back.” — Kaitlin H.

5. “It’s like when you’re watching a scary movie and that girl decides to go into the dark spooky room alone and it’s making you angry just watching it happen… ‘Stop! Don’t go in there! Why is she going in there?’…Except you are the girl and you’re watching yourself, but you still don’t feel like there is anything you can do about it.” — Amanda A.

6. “There is a voice in the back of my head every day. Some days, this voice is louder than others. It tells me everything around me is falling apart and I am not worth it, but if I can control what I put in my mouth, everything will be easier. It tells me what to see when I look in the mirror. And even though I know the voice is a lie, I still wonder, ‘Is it?’ It is exhausting, it is an uphill battle, but there is still hope I cling on to when I take three steps forward and one step back.” — Catherine Z.

7. “An eating disorder is being trapped in a room with an angry tiger. Recovery is learning how to lock the tiger in a cage, then taking him out three to five times a day, walking him around the block, and locking him up again.” — Jen R.

8. “My eating disorder was like a faulty parachute. I would strap it on for safety, trust it and I would jump from the plane… a brief moment of bliss would be followed by a crash landing and feelings of shame, regret and remorse. I would stand up, brush myself off, put on a smile, say ‘I am fine!’ and strap on the parachute again. I thought is was my safety.” — Brooke H.

9. “It is your secret shame and your greatest accomplishment all in one. It is like Stockholm syndrome where you have fallen irrevocably in love with the terrorist holding you prisoner — the need to please them outweighs all common sense.” — Tami B.

10. “Living with an eating disorder is like constantly walking around with a cement bag on your shoulders. Feeling constant anxiety to try to hide the shameful weight on your shoulders. Feeling like a failure because you can not seem to do a simple act of feeding yourself. Constantly disappointing family and friends around you (as well as yourself) because going to gatherings or spending time with people always involves food. The feeling of being trapped with a plate of food and people commenting on what is on your plate or how much you did or did not eat is not enjoyable and causes more anxiety than anything. Lying to avoid conversations or being attacked brings on a huge amount of guilt as dishonesty is not a quality we wish to practice.” — Suz E.

11. “I always explain it by saying it’s like when you write a word down, but the spelling looks wrong… but it’s not. That’s what happens to me when I look at myself or think about myself. I know it is perfect the way it is, but I hate it and want to change it and it won’t stop bothering me until I relapse and restrict or start purging again.” — Dani V.

12. “It’s watching life go by without participating in it because of the constant tug of war you are having with your thoughts.” — Joseph L.

13. “It’s like living with a drill sergeant in your head. Even after you get to a place where it’s under control, what you have being through will always be in your head, even if it’s far back.” — Madison K.

14. “It’s unrequited love. You become obsessed with this idea, this future, this picture in your head of your perfect life, and then you realize that person doesn’t love you back. You want to forget and move on, but every day you wake up and think ‘maybe today will be different, maybe today they will love me, this will be worth it.’ Your thoughts always come back them, no matter how hard you try to fight it, and it’s exhausting, embarrassing, overwhelming. You don’t want to talk to anyone about it and instead plot ways to make them love you, knowing it is terrible for you. You live inside your head, in this fantasy world, trying to forget that everything makes you think of them.” — Samantha D.

15. “It’s like you’ve been swimming and swimming for hours and every time you think you’re about to find the shore, it moves further away. You’re constantly exhausted and struggling for air. It doesn’t end, you’re drowning and until you decide to stop reaching for that impossible goal weight and start eating. It’s hell.” — Sara P.

16. “Having an eating disorder is like seeing a chair in front of you that is painted red. You know it’s painted red. All the people you love stand beside you and insist the chair is green. Your life depends on realizing it’s green, but you never see it. Eventually you may learn to trust your loved ones. The chair must be green. They love you and wouldn’t lie to you… right? But still, no matter how long you stare at it, the chair is clearly red. So your survival depends on trusting their judgment above your own in this particular case. And that is hard. As. Hell.” — Sarah G.

17. “Your body is a ship. Your mind is the captain. The captain plans a voyage to circumnavigate the world. He packs up the ship with only a few gallons of water, a little bit of food, about half a tank of fuel and no form of communication. This captain will stop at nothing to accomplish his goal of sailing around the entire world. He’d rather see his own ship disintegrate and sink to the bottom of the ocean than to stop the mission and take on more supplies or ask more experienced navigators to help him and his crew. Because to this captain, asking for help or refueling is weakness. Miraculously, the captain makes it around the world, but all that is left of his ship are a few planks of wood and a paddle he had to use to make it the last few miles. Surprisingly, the captain isn’t even happy he accomplished his mission. In fact, he thinks he made his initial goal too easy. He makes a new goal to sail back around the world, but this time with half as many supplies as he started with the last time.” — Bobby K.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.