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Eating disorders have the highest mortality rates of all mental illnesses, with one person dying every 62 minutes in the US. Yet by disregarding victims' voices, we're perpetuating misconceptions and creating a culture that allows EDs to thrive.

My eating disorder didn't just come out of nowhere, I realized as I tried to understand what caused it. No — my eating disorder was silently nourished throughout my entire childhood. Puberty just gave it a chance to reach its full, dubious, soul-destroying, potential.

Today, I'll be sharing some of my experience in fighting an eating disorder, to help people who don't have eating disorders themselves be there for their loved ones who do. Here's what I really wish everyone knew about eating disorders.

Society's role in manufacturing eating disorders is often downplayed to just one thing — portraying images of very thin models on shiny magazine covers that teenage girls stare at in awe, hoping to become as "conventionally pretty (thin!)" as these models.

There is no doubt that the media plays a significant role in manufacturing eating disorders. This was recently demonstrated in a study conducted on Fiji, until recently a relatively media-naïve society with little Western media influence. Researchers measured the eating attitudes and behaviors among Fijian teenage girls before the introduction of regional television, and then again after prolonged exposure. The researcher's initial suspicions were confirmed; they found a significant increase in disordered eating among these girls.

The idea that society’s role in causing eating disorders is limited to the media is dead wrong, however. Certain genetic components increase susceptibility to eating disorders, but we as a society allow them to thrive. We value thinness and treat fatness with disgust and shame. We have created a society in which our lives largely revolve around food and looks.

Our relationship with eating is set up all wrong from the very outset. I believe all of these factors have an even greater impact on allowing eating disorders to thrive than the media. Some researchers also found that certain cultures and political situations promote the development of eating disorders.

But we are not powerless against this culture that promotes and embraces disordered eating, mere bystanders observing events bigger than us. Thirty million people in the US alone have eating disorders. This means chances are very high indeed that someone you know has an eating disorder, whether you’re aware of it or not.

You might not notice it, but by believing and perpetuating misconceptions about eating disorders, you are actively participating in a pro-eating disorder culture. Recognizing the things you’re doing wrong, and learning how to help a person with an eating disorder, has a direct influence and can be of immense importance to people with eating disorders around you.

Myths about eating disorders you need to stop believing right now

Eating disorders are about how you look

Eating disorders and their line of development are incredibly complex, like a dance between a sea of biological, sociological, and psychological factors. Disordered eating might start as a way to change how you look, but it’s the sum of what your appearance, food, and weight mean to you and what your eating disorder is "doing for you".

A lot of times, eating disorders can be a way of coping with the world or a reaction to it. When you’re keeping your mind occupied with food and exercise rituals, the rest of your life ceases to matter. 

Researchers still can’t deduce how exactly eating disorders happen. Eating disorders can strike people who suffered sexual trauma and other types of abuse in childhood, or on the contrary those who had overprotective parents, emerge from other disorders like OCD/OCP, anxiety disorder, or traits like perfectionism.

In each of those cases, the eating disorder represents something different to the individual who has it. The development of an eating disorder shouldn’t be seen as a person's coping strategy of choice, but a subconscious answer that’s tightly correlated to biological factors, with genes accounting for 50 to 80 percent of the risk of developing anorexia nervosa (AN) and bulimia nervosa (BN).

Eating disorders mostly just affect teenage girls

Eating disorders don’t discriminate on the basis of age or sex. As a result of perpetuating this misbelief, eating disorders in males remain underdiagnosed, undertreated, and misunderstood. Stigma also surrounds older adults suffering from eating disorders, with the assumption that eating disorders just don't develop at that age. Yet, 13.5 percent of women over 50 have an eating disorder.

People with anorexia just don’t like food

While several types of anorexia also include people who never cared that much about the taste of food, the majority of us like food very much, but have developed a love-hate relationship. Not eating doesn’t come naturally, but develops as a forced answer driven by disordered thinking.

Things you should stop saying about eating disorders and to people who have eating disorders

Stop commenting on people’s weight, weight loss, or weight gain

While your intentions might be good when you compliment someone's weight loss, your comment might be much more damaging than you believe. Many anorexic women report that the sea of compliments they got for first losing weight fueled their eating disorder.

I share the same experience. The comments I got further confirmed an already established relationship between my worth and my weight, which would later prove nearly impossible to erase. At least subconsciously, I felt like I'd be a better person if I weighed less. When the tone of the comments transformed from excitement to worry and even disgust, with many people telling me that I lost too much weight, it still had the exact same effect — inspiring me to lose more.

The idea often perpetuated in anorexic communities is that one can never be too thin, so hearing I'd lost more weight always felt like a compliment. On the contrary, after that golden phase in which you feel proud of your accomplishment, some people in recovery might be desperately trying to gain weight and commenting on the fact that they’re too thin would make them feel ashamed and like they’re making poor progress. 

Commenting on weight gain can be even more damaging, and this is especially true if the person is in recovery. Gaining weight can be extremely hard for someone with restrictive types of eating disorders, because it’s our worst fear coming true. So when you say “You look healthier” or “You look so much better now”, the only thing some people with eating disorders hear is, “You’ve gained weight and I can tell”.

“But you don’t look like you have an eating disorder”

This is the reason many of us will wait to look “sick enough” before seeking help. 

Being thin is not a requirement for having an eating disorder.  Not even for anorexia. The diagnostic criteria from the DSM-IV written in 1994 were changed in the new DSM-5 to exclude weight criteria and amenorrhea (a lack of menstrual periods in women of reproductive age) for the diagnosis of anorexia nervosa.

Some people who are not underweight still have anorexia, just like some people don’t look or seem depressed and surprise everyone with their suicide. The diagnosis of an eating disorder is made based on eating habits, and perceptions of food, body, and weight gain. Mental disorders don’t have to look a certain way.

“Just eat”

This one’s a gem that passes the lines of being ignorant and is just offensive. It’s not like someone in recovery wouldn’t give anything to just eat rather than spend several weeks or months trying to relearn what normal eating is.

Sharing your healthy diet tips

Only slightly better than "just eat". Someone whose life revolves around eating very much knows all the diet and eating habits there are, and while you might think you’re helping, you are just doing the opposite.

The person you direct these "helpful tips" to might also feel offended, especially if they’ve been struggling with an eating disorder for a long time. You’re assuming that this person hasn’t researched all the ways to get rid of something that’s ruining every part of their lives. You're almost certainly wrong.

How to be there for your friend with an eating disorder

I can't give you one universal step-by-step guide that will work for all people and all types of eating disorders. We’re all different and might need a different kind of support. What I can do. however, is tell you what I found to be helpful both for my anorexic and bulimic periods and ways through which my friends truly helped not just with recovery, but to survive the worst phases of my eating disorder. 

Make your loved one with an eating disorder feel safe

One friend was particularly helpful to me during the worst of my eating disorder. Since the moment I met her, she never commented on other people's bodies, how thin or fat they are, how much they lost or gained. She just made it seem like it genuinely wasn't a big deal. Not once in a decade of my eating disorder fight did she tell me that I lost or gained weight.

At the start of my eating disorder, when I was very excited about the weight I lost, this would make me feel almost irritated since it was the biggest, most important thing to me and there were moments when I was proud of it. But this is exactly what made me feel safe around her during more difficult times.

While most people don't like gaining weight, for people with anorexia nervosa and bulimia nervosa, weight gain is not merely an inconvenience. Whenever I would gain what I deemed a significant amount (which really could only be a few pounds), I'd feel not just ashamed, but worthless. It felt like I did the worst thing that I possibly could and I'd suddenly felt unworthy of love or support.

Needless to say, I didn't feel like seeing anyone, or rather I didn't feel like anyone should see me. This led to feelings of isolation and loneliness, since it's wasn't that I didn't want to spend time with my friends, I just didn't want them to see me like that.

And that was true for anyone but this friend. By refusing to give value to or in any way acknowledge my weight changes, she made me see that, in her eyes, I wasn't defined by my weight or my eating disorder. I'm now aware that my worth is not defined by my weight, but to this day she is the only person who truly makes me feel that at all times. 

Be a rock your friend with an eating disorder can lean on 

Eating disorders are hard on the whole family, not just the person who is suffering. Sometimes that means people with eating disorders will watch their mom cry herself to sleep because she can't help. Sometimes, an eating disorder will ruin a family vacation.

I was painfully aware of how much I hurt the people who love me and who I love. I put them through too much, and that killed me. But my eating disorder was the one in control. So, I tried to talk to my family as little as possible about my eating disorder and the struggles it caused, because this eating disorder was already a part of everyone's lives — sitting in the room with us all the time, growing bigger and bigger as we tried to look away to have one normal day. Nobody needed to hear more about it. 

But I could tell this friend everything, without worrying that it would break or hurt her. I know that the things I'd tell her weren't easy to listen to, but she was my rock and I always felt I could share even the worst of thoughts. Looking back, I have no idea how I'd have made it if it wasn't for that. 

Listen without judging 

Sometimes I just really needed someone to know how I felt. I knew that my thoughts were disordered and irrational. I knew how crazy my inner thoughts would sound to other people. But those thoughts were on my mind every moment of every day. I needed to share them, and not with a professional who would simultaneously calculate which medications or how many days in hospital those thoughts were worth. 

A lot of times I didn't even need for the thoughts to change, I just needed to let them out. And getting them out there also made it easier for me to recognize the parts that were inconsistent even within my eating disorder logic system. I needed to tell someone that eating an apple ruined my day without feeling like my thoughts were illegitimate just because they're irrational. I didn't choose to feel that way. 

Remind your loved one with an eating disorder that they're worthy

Regardless of their weight, regardless of what they've eaten today, how well they're doing in recovery, or if they even want to recover. Remind them, because there might be voices in their head that are constantly telling them otherwise. 

Visit your friend if they're in hospital 

This is important. Inpatient treatment for my eating disorder felt like a whole new level of hell to me. You're isolated from everything familiar and surrounded by white uniforms — who I saw as ever-present hawks monitoring and just waiting for me to do or say something that would justify more treatment, food, or meds.

Seeing a friendly face in that unfriendly crowd meant the world to me, reminding me that my life was waiting for me outside. Reminding me that I have something I'm fighting for. 

Ask how you can be of help 

This might seem obvious, but people rarely actually do this. Your friend will tell you what they need, and even if they don't, they'll know you're here.

This is not completely applicable to family members though, or in most instances when the person with an eating disorder is refusing to work on recovery. If you're a direct part of someone's recovery, their medical team will give you exact instructions on what you should do and it is important to stick to that. That's often a hard role, and the person in question might resent you for it at first, so make sure you also have emotional support for yourself as you support a relative with an eating disorder. 

Eating disorders are not all black and white

I developed my eating disorder in my teenage years, and even though I’ve gone through recovery and normalized my eating patterns, it still feels hard to truly let go. This eating disorder voice has been a part of me for at least a decade, the majority of my adult life, and I feel as if it is a part of me. Can you kill a monster inside of you if you’re not sure where it ends and you begin?

But just like a bad relationship, it’s not all that bad. Anorexia can be so seductive in the beginning, rewarding you with all sorts of positive feelings. It has what I call a "golden phase" that truly makes you feel like you’re on top of the world and everything else ceases to exist. My physician later told me that it’s not all psychological either — your body can get hooked on a so-called “hunger high”. This a body’s response to high levels of ghrelin, the hormone of hunger, and mediated by dopamine and endorphins. You bind yourself with feelings of hunger as something good and stop interpreting it as your body’s way of saying it needs food.

It can also make you feel special. You watch your friends panic because they haven’t eaten for several hours and you smile silently, knowing you haven’t eaten for several days and you feel completely in control of your body. But the honeymoon ends, and you realize that you were never the one in control.

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