Life with Ed, Part 5: It’s not about ______________.

Today is the start of National Eating Disorder Awareness Week, so even though I’m all posted up here recovering from surgery on my deathbed, I couldn’t pass up the opportunity to write another “Life with Ed” post. T-Rex Mom has been here taking exceptional care of me all week since my surgery, and when I told her it was Eating Disorder Awareness Week, her response was “What the hell…why would anyone want to celebrate that?” Apparently she thought I meant “Eating Disorder Appreciation Week,” so that was awkward. Nope, this week is not about appreciating eating disorders, it’s about spreading awareness about them, and that’s kind of my whole goal with this series of posts. Perfect! The slogan for the week this year is “Everybody Knows Somebody,” meaning that whether you realize it or not, you almost certainly know someone with a clinically significant eating disorder, and it could be someone much closer to you than you think.

At least peas are delicious.
At least peas are delicious.

The purpose of today’s post is to dispel some of the most common misconceptions about eating disorders and what causes them. To start, eating disorders are not a lifestyle choice – they’re a disease. From the amazing feedback I’ve gotten on this series, I’ve had a lot of people tell me that their thinking about eating disorders has completely changed. Many thought people with eating disorders were just vain, dramatic, etc, and now they see the disease in a different light. While there are many contributing factors to eating disorders and any one of the items listed below could be a small piece of the puzzle that answers why any given person has an eating disorder, none of them are the singular cause. I don’t mean for this post to come across as angry or resentful at all, but it may seem that way at times, so if it does, I apologize. There’s just only so many times you can hear some of these things without wanting to lose it – kind of like how you feel when you go to a football or baseball game and they’re still playing “Who Let the Dogs Out?” as a pump up song, even though it’s no longer 1998.

Disclaimer: This is a series of posts about my experiences with anorexia and bulimia.  Many of the things I discuss could be extremely triggering if you are dealing with an eating disorder, so please read at your own risk. I am not an doctor or a therapist. I am simply telling you my story and these are just my experiences. I don’t speak for anyone else.

1. It’s not about boys.

I would say this is one of the biggest misconceptions I hear about eating disorders and also one of the most annoying. From the outside, eating disorders may seem like an exercise in vanity, so I suppose I understand where the idea comes from. I have been told countless times that “Guys don’t like girls who are too skinny. Guys like girls that have curves.” Cue hate spiral. Um…ok?Who cares? Who said this had anything to do with that? When you’re in the grip of an eating disorder, you definitely do not find yourself attractive or worthy of love. You think everyone else thinks you’re just as disgusting and worthless as you do, and therefore the last thing you want is more  attention from anyone, especially guys. True intimate physical contact is probably the last thing you’re looking for (Note: This is not the same thing as sex. Some ED patients, particularly those with clinical bulimia, report higher rates of promiscuity during peak times in their disorder.). There is no adequate way to stress enough that the root of this has nothing to do with trying to make yourself more attractive to the opposite sex (or same sex). While some people may develop disordered eating habits in response to attention (or lack thereof) from a person of interest, this alone is not enough to cause someone to have a full-blown, multi-year eating disorder. We’re not talking about a diet here.

Alright, it's clearly not THAT obvious, but who doesn't love a Full House throwback? Extra points for me if this is Mary-Kate Olsen, who suffered from anorexia.
Alright, it’s clearly not THAT obvious, but who doesn’t love a Full House throwback? Extra points for me if this is Mary-Kate Olsen, who suffered from anorexia.

2. It’s not about the media/models/celebrities.

This is a tricky one, because there is evidence to support that social and cultural norms of thinness can contribute to the development of eating disorders. Many ED patients, particularly those with anorexia, will use a type of “motivation” known as “thinsperation” or “thinspo.” Thinspo is usually pictures of rail thin models, celebrities, or even other ED patients that have extremely thin frames. The more bones that are sticking out, the better. That being said, while these uber-thin models and celebrities are used by patients to “motivate” themselves to continue their behavior,  your average eating disorder patient did not develop anorexia or bulimia because she just had to look like her favorite movie star. While cultural and social norms definitely emphasize thinness as the ideal size for women and a lean form for men, we’re not talking about your average person’s idea of thin. To a normal person, I am thin, but people with eating disorders don’t want to look like me. They want to look like human skeletons. So that’s why I say it isn’t really about the media, because at the core, it isn’t. If it was, eating disorders would be much easier to cure.

Excellent example of thinspo.
Excellent example of thinspo

3. It’s not about you.

One of the things I have heard most often after telling someone that I have an eating disorder is “Wow, if you think you’re fat, you must think I’m a whale!” For the record, no, I do not. My distorted body image is my own, and it has nothing to do with how thin or fat anyone else is. Isn’t that pleasant? I am completely responsible for my own distortions. Hooray! In fact, I almost certainly think you are thinner than I am, no matter what your size may be. For example, one of my best friends used to be significantly overweight, weighing easily 100 pounds more than me. When we were in college together, I found myself looking at her thighs and thinking that hers were smaller than mine – even though I knew that factually speaking, I wore a size 0 and she was a size 16. No way our thighs are the same size, right? But in my head, they were, or mine were bigger. Eating disorders don’t necessarily affect your opinion of the people around you, they just affect your opinion of yourself. It’s odd, but I can honestly say I have a pretty realistic perception of how much other people weigh, and I don’t think that everyone who is bigger than a size zero is fat. You all can rest easy. I’m not judging you for your weight. Everything else is fair game.

Kris Jenner, on the other hand, is totally judging you for your weight.
Kris Jenner, on the other hand, is totally judging you for your weight.

4. It’s not about vanity.

This one kind of comes back to eating disorders not being about boys, or celebrities, or anything else. As I said in a previous post, there is no such thing as a “goal weight” for someone with an eating disorder. People go on diets because they want to look better, so it’s pretty easy to see why people might think of eating disorders as just a more extreme form of dieting, but eating disorders are not diets. I mean, we all probably think we could be a little bit thinner, right? Everyone has an idea of what they’d ideally like to look like. But in order to lose that last five pounds to reallllllyy look your best, are you going to eat 300 calories a day and exercise for 3 hours plus? Are you going to throw up everything you eat? No, you’re probably not, because being thinner is something you would like to do, but not something you are compulsively driven to do. In order to exhibit these extremes in behavior, it takes a lot more than just wanting to look good in your bikini at the Sandbar this summer.

5. It’s not about food.

Seems strange, right? But ultimately, food is just an eating disorder patient’s drug of choice. Think about it – a meth addict doesn’t become addicted to meth because they’re just so in love with scratching their skin raw because they think bugs are coming out of their skin, right? They like they high that meth gives them, but a happy, well adjusted person is probably not just going to pick up a pipe and start smoking meth one day. Drug addiction, like eating disorders, are usually a sign of something else going horribly wrong in the life or brain of the addict. Maybe there is a bad home situation, or the person has low self esteem, suffers from depression, etc. People with eating disorders, whether they are anorexic, bulimic, or binge eaters, are taking out their internal emotional and mental struggles on food. As a result, food becomes the comfort, the enemy, the friend, and the cause of anxiety. Until the root of the feelings that are causing the eating disorder is addressed, the behavior will continue in some fashion. From my personal experience, I can tell you that there are times when I have gone into a period of recovery with my eating disorder, only to find myself compulsively shopping or drinking more alcohol than I am comfortable with. Eating disorders are an outward manifestation of an inward problem, and food control just happens to be the behavior of choice.

Sometimes I think it would be easier to be a drug addict.
Sometimes I think it would be easier to be a drug addict.

One of the biggest problems with eating disorders and part of what makes them so difficult to cure is that we depend on food for survival. People have to eat in order to live, which means someone with an eating disorder, regardless of whether it’s anorexia, bulimia, or binge eating disorder, has to face their “drug” at least three times a day just to survive. Drug addicts do not depend on drugs to exist, so in theory, staying off of drugs depends in large part on staying away from drugs, which is possible, although difficult for addicts. People with eating disorders cannot stay away from food. I explained it to my friend the other day like this: think back to a time when you really wanted to do something more than anything else in the world, but you knew it was dangerous and bad and wrong and you shouldn’t do it. Think of how hard it was to stop yourself from making that decision (or maybe you didn’t stop yourself, whatever) just that one time. Now imagine having to make that decision (the right one) over and over again, multiple times a day, for the rest of your life. That’s a small piece of what it is like to have an eating disorder.

The takeaway: what it’s all about.

So, what are eating disorders all about? At the source, it’s about control. The National Eating Disorder Association says: “While eating disorders may first appear to be solely about food and weight preoccupations, those suffering from them often try to use food and the control of food to cope with feelings and emotions that may otherwise seem overwhelming. For some, dieting, bingeing and purging may begin as a way to cope with painful emotions and to feel in control of one’s life. Ultimately, though, these behaviors will damage a person’s physical and emotional health, self-esteem and sense of competence and control.”

In some ways, I guess it is fair to say that eating disorders are very selfish. At the very least, they are inwardly focused, with no regard or respect for how the people around you think about your body and your actions. No matter how many times people tell me how skinny I am or how great I look, I have managed to convince myself that those people are either stupid, crazy, lying, or all of the above. You begin to not trust anyone because there is this gripping paranoia that everyone is trying to take your eating disorder away…which they are. No one wants you to have an eating disorder. It’s that simple. If you’re not ready to let go yet, this is a very terrifying thing to accept. Understanding what eating disorders are and are not about will ultimately help you to better understand how to help someone you know that’s in need – and everybody knows somebody.

Leave a comment: I know I missed some, so if you’ve suffered or are suffering from an eating disorder, what are some of the other misconceptions you’ve heard? What else are eating disorders “not about?”

Also, I’m still taking questions about eating disorders (mine or EDs in general) for the Q&A blog, so leave a comment! You can be anonymous 🙂

20 thoughts on “Life with Ed, Part 5: It’s not about ______________.

  1. This entire post helps so much in explaining why people continue with the disease. People really do not have an idea as to why we do it and the simple fact that we do it because it is the only thing we can control in our lives is unimaginable for people without ED.
    This week was extremely hard for me because I was overwhelmed with so much stress. So, as a person living with ED, I reverted back to it because my ED is literally the only factor in my life I could control. But I didn’t do that. Instead I told a friend about how I was feeling & felt like I was going to go back to ED. After talking it over, I realized that I could overcome my stress without looking to my ED.
    It really is about control. Not for anyone else but the satisfaction that I have control.

    Thanks boo, for posting this part of the ED. This is so important for people to understand.

  2. Thanx T-Rex for writing about a deadly important issue the way You are.
    I think you manage to minimize the blame, guilt about eating disorders.
    As with abuse, addiction I think eating disorders is about not being able to cope with life and therefore stop reality living by Withdrawing from reality into an inner fantasy world leading to a slow(-er) suicid.
    I don’t know your choice of fokus on (woman) gender above it give (at least) me the impression that eating disorder is about women. Your views (that I think are you are right in) a even better and more true message if you chooses a “genderfree” argumention since eating disorders affects human beeing not gender.

    Hope to sooner than soon see your first Marathonreport POST-surgery ;0), and that you give yourself good time and space recover.

    Sincerely
    Andre’ Sinclair

    1. Andre, you are so right. I have tried to touch on the fact that eating disorders do not just affect women, because they don’t. The problem is that I AM a woman, so I don’t know how to write about the experience of a man, and it seems like there are different pressures that contribute to the development of eating disorders in men. I’ve tried to be really careful about not making my experience seem like everyone else’s experience, because we’re all different, but you definitely make a great point.

  3. So how do you help someone with an eating disorder ? What do you do? What do you say? I read most of your ED and running blogs. You are an exceptional writer. But I need more.

  4. Thanks so much for this series. I’m a dieter, and when my son started repeating some of the body image/food/diet things I said, I realized I needed to shut my mouth and talk about healthy eating, not about how Mommy will be happy once she loses ten pounds. I’m not an idiot, I know boys can get eating disorders too.
    I do have a question about the media part. (I will try to phrase it properly, so be nice to me if I say the wrong thing.) Were eating disorders as prevalent “back in the day” when there weren’t so many rail thin models and movie stars? I don’t know the stats, but I assume there a higher rate of eating disorders among models. Is it a competition thing for them, or… I don’t know?
    Also, I don’t want to get ahead on the series, but since it’s a control thing, can OCD medications help? (I also can’t count calories because I’m OCD enough to turn it into a competition with myself.)

    1. Hi Kate! I’m sorry it’s taken me a few days to respond.

      Yes, eating disorders are definitely rising in prevalence and have over the past 50 years. It’s hard to say whether it’s the media’s ideals of thin, the rise in exposure we have to images from Hollywood in general (much more tv, magazines, etc), or if it’s the increasing pressure to be perfect and keep up with the Jones’ in all areas of life. It’s probably a combination of a lot of factors.

      Models do have a higher rate of eating disorders than the general population, but we can’t assume that all models (or even most models) do. To some extent, models are built to be naturally tall and thin, and most of us couldn’t diet our way into being a supermodel even if we wanted to. Rates among college athletes are also slightly higher than the general public, but not nearly as elevated as models.

      Yes! OCD medications can help, and eating disorders are related in some ways to OCD.

      Also, I think it’s great that you recognized your behavior and speech around your son early on. That is so important! Thank you for your comment and your questions.

  5. Does Nana know your mom said wth? lol.
    Can you do me a favor? Text me the websites you gave me for tracking food and workout? I want to pass them along to myf friend Amy and make sure I have the right ones in my favorites. TIA 🙂
    How are you feeling? I hope AJ is taking good care of you now. Did your Mom leave?

  6. Another wonderful post, and actually the one I was looking for. My light bulb lit up on #5 (“…only to find myself compulsively shopping or drinking …”). You have obliterated the myth I was harboring and which I think a lot of people hold, namely: EDs are just an extreme reaction to self-image issues. You’ve succinctly de-bunked this idea. You rock! I hope recovery from surgery is going OK – be patient, and no laughing dammit. 😉

  7. i have enjoyed this series so far and look forward to what has yet to be written. My question is: How do you have the energy to run all those marathons while having an eating disorder? I find that as my pants size gets smaller (I have a bmi of 19.2 currently) my energy level also gets smaller and I’m more apt to get REALLY hungry during a run even though I wasn’t hungry when I set out for my run.

    1. Actually, running is a big part of the reason I’ve gotten as far along in my recovery as I have. When I got my stress fracture back in 2010 from nutritional deficiencies, it was a big wake up call. Although being thinner can make your mile times drop, the body can only run for so long without appropriate fuel. Now, I’m a lot more careful about what I eat and I make an effort to eat more and eat food that can really fuel my body. I’m constantly hungry, and I try to remind myself that my body is telling me that it needs more fuel because of how much I am doing! Running so much has helped me to feel less guilty about what I eat and helped me to make better choices. It’s ok to be hungry after or during a run – you’re running!! If your energy level is diminishing, you probably aren’t eating enough, and that will catch up with you, your body, and your running.

      A BMI of 19.2 is getting pretty close to being underweight, so please be careful. If you feel like you might need help, please email me.

  8. 1. When someone finds out you have/had and eating disorder they almost ALWAYS give you the up-down, basically saying “You don’t look like you have an eating disorder!”
    2. After said up-down, the person goes on to tell you about a time when they lost a bunch of weight in a really short period of time, “Yeah, when I was a sophomore in high school I got mono and just couldn’t eat. I lost like 15 lbs in 1 month.” Well I’m sorry to hear that but NEWS FLASH: having mono is NOT the same as having an eating disorder!
    3. Men struggle just as much with body image and eating disorders. Just go to a gym and observe the amount of super jacked men starring into the mirrors continuing to lift until it seems as if their muscles are going to explode from under their skin. I don’t know the actual statistics but I do know that the prevalence of male eating disorders is rising. Sadly, men are often too ashamed to seek help because it’s a “female” disease which is heart breaking!
    4. ED-NOS is not a “real” eating disorder. Bullshit. Insurance companies suck because they say they won’t cover treatment unless its a full-syndrome eating disorder. To someone with an eating disorder they hear, “You’re not sick enough” and it only compels them to continue with the destructive behaviors.
    There are so many misconceptions and these are just the ones that come to mind. I am a recovering (4 years) anorexic and have done extensive research on eating disorders because I don’t want people to have to suffer anymore. I think what you are doing is incredible, especially in the running community.

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