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11 Things I Wish Others Knew About Eating Disorder Recovery

I have decided to compile a list of things I wish those around me knew about my recovery journey in hopes that it helps some of them (and maybe even others) understand even the slightest bit more.

Anyone who has struggled with an eating disorder would know the amount of shame and stigma that can be placed upon them and the diagnosis. Trying to cope not just with the illness itself, but the constant influx of uninformed comments and misconceptions makes the load even more difficult to carry.

So here are some things I wish people knew about eating disorder recovery:

1. It’s not always all about the food.

I know. It is called an eating disorder, how could it not be about the food? Quite simply put — food is the pawn in the never ending mind game, the addiction. And by “addiction” I mean a person struggling with an eating disorder may be addicted to food in some sense. Whether that be addicted to eating food, thinking about food or punishing themselves with food. There is an underlying reason as to why the person engages in disordered eating behaviors. It actually has less to do with the food than you think.

2. Not all people who struggle with an eating disorders have a noticeable change in physical appearance.

In fact, people who struggle with eating disorders may feel unworthy of help and do not reach out for support because of the idea that they are not “sick enough.” And what does sick enough mean in the mind of a person with an eating disorder? It can be “not thin enough.” From my personal experience, I can tell you honestly that there have been many times where I have struggled more with my eating disorder while maintaining a healthy body weight than when I have had dramatic physical changes to my body. I can also tell you that at least 9 out of 10 people I have met who are battling eating disorders look “healthy.” You cannot tell if someone is struggling — nor how badly — simply off face value.

3. Anorexia is not the only eating disorder.

This common misconception is perpetuated by misinformation and lack of overall knowledge, as well as the media’s obsession with sharing and idolizing “thinness.” Anorexia is also one of the least common eating disorders, yet the most well known. (Go figure?) There are many types of eating disorders ranging from anorexia nervosa, anorexia nervosa subtypes, bulimia nervosa, binge eating disorder, orthorexia  (which is not recognized as an eating disorder is some places), purging disorder, other specified feeding or eating disorder (OSFED), etc. And just as a side note: No eating disorder is “superior” over another. They can all kill. There is nothing superior or glamorous about it.

4. When recovering from one eating disorder, it is possible to fall into the grips and behaviors of another.

This is something no one ever warned me about. No one, not a single soul ever told me that this is a possibility. And for so long, I felt alone because everyone around me had the same mindset and thoughts surrounding recovery. They thought that because my weight restored and I, for the most part, recovered from a restrictive eating disorder, that I was “fine.” Little did they know that my obsession with exercise had reached an all time peak, I had turned to purging away my guilt and now struggled not only with forcing myself to eat, but then the guilt of not compensating for doing so. It wasn’t until I heard someone else speak up about this that I realized I wasn’t alone. So if you are in a similar situation right now, please know that you are not alone in this despite how alone you may feel.

5. An Eating disorder does not just appear overnight, so it won’t go away overnight, either.

Stop for a moment and think, how long did it take for you to learn how to drive confidently and safely? If you didn’t drive for a month and then got back in the driver’s seat, would you have forgotten all of the skills you learned? Probably not. So if a person struggling with an eating disorder has acquired habits the same as you do when learning to drive, it will probably take quite some time to forget about them too (although the behaviors are probably not “forgotten,” per se.) They may become no longer habitual and causing harm, at least after an extended period of time where the correct guidance and support is provided.

6. “I want to recover… but I am exhausted.”

I have said this a million times, and more often than not I have been met with the response of “you just need to commit to it” or “if you really wanted to recover, you would have by now” or my all time favorite “no you don’t, you like the attention being sick brings you”.” No. Stop right there. It is not a matter of “just” committing. And it is by no means something that you can put a time-frame on. And hell to the no is being sick and the attention it brings enjoyable. Speaking for myself here, but I do not enjoy the attention of the old lady at the pathology lab twice a week prodding me with needles taking my blood and questioning “why I don’t just eat.” Recovery is a full-time job plus overtime. And the only immediate payment I have ever received from the hard work I put in is the good night’s sleep I get because I am so exhausted both physically and mentally. Try fighting the urge to urinate while drinking coffee with the sound of a dripping tap playing through your headphones full volume. Now add in being chased by a crocodile in the mud with 10 bricks on each shoulder. As hard as that is to picture in your head, let alone actually do — that’s what recovery feels like to me plus some. On a good day. Exhausting? Yes. Ridiculous? That, too.

7. When the eating disorder is managed, quite often the symptoms of other mental illnesses are exacerbated.

For example: Once I began to eat regularly and no longer used compensatory behaviors to regulate my emotions and punish myself, my depression became more noticeable. At first I blamed the depression on the weight gain and changes to my body. Reality is, I could no longer numb out the depressive symptoms by using disordered behaviors. When you are consumed by an eating disorder, you do not have the capacity or space in your mind to comprehend much else beyond your body and what you put into it. All of the brain power you have is used up on obsessing over weight and shape. Do not make the assumption that a person who recovers from an eating disorder and “suddenly becomes depressed” is just “bouncing from one diagnosis to another.” Because I don’t think I have ever met a person who is struggling with an eating disorder that doesn’t have a comorbid mental health condition.

8. Recovery is the hardest thing I have ever attempted.

I do not have the words to describe how difficult recovery is. But I will try. It isn’t all “here eat from this meal plan, and you will gain a few pounds and be OK.” Recovery is the most difficult thing I have ever attempted in my life. Think of the one thing in the world that scares you the most, then imagine being confronted with it multiple times a day for the rest of your life. Letting go of the eating disorder that has been with me through thick and thin (for lack of a better word), is petrifying. But what is even harder and more petrifying? Coming to the realization that not recovering is like a death sentence. Then deciding to recover and literally fighting against yourself every time you go to fuel your body. And then more often than not becoming so overwhelmed that giving in feels like the only option. Being so afraid of your own mind that death doesn’t seem like the worst thing that could happen anymore. Fighting a battle within, every waking hour, but being terrified of sleeping out of fear that your heart will stop because of what you have put your body through. It is a constant push and pull between life and death. And that is no exaggeration. Recovery is the hardest thing I have ever attempted.

9. You can not make someone recover.

Yes, you may feel like you can influence a person with an eating disorder to make choices that align with recovery, but this is their journey. The decisions made are their own. And it is vital in recovery that the person knows their opinion is valued and valid. You can try and guilt the person by making them feel “selfish” all you like. Just know that it is more detrimental than helpful.

10. Weight restored does not mean recovered.

For those who do need to gain weight in recovery, yes it is a huge milestone once weight restoration and maintenance occurs. But from my experience, it by no means implies recovery. It is weight restoration — literally restoring lost weight to a healthy body weight (and usually a bit of wiggle room weight, too). Nowhere in those two words does it say “I have gained weight, so I am now recovered.” I’m going to leave this one at that…

11. Suicidal thoughts and comments aren’t a “cry for attention.”

The overwhelming emotions tied in with living with an eating disorder, let alone rebelling against it, are incomprehensible. The guilt and shame. The feeling that it will never end. These are real. And when they come up, they come up with a vengeance. Being unable to breathe, eat or sleep. And being so convinced that you take up too much space in the world; that you are a waste of air. And that you are wasting the time of those supporting you because “you will never get better.” These thoughts are hard enough for a person without the extra burden of an eating disorder, let alone someone with one. Many deaths that occur in patients with a history of an eating disorder are suicides. Let that sink in for a minute. That my friend, is not a “cry for attention.” It sometimes feels like the only way to escape the constant battle within. The only way to end the torment and pain.

I have a lot of other things I wish people knew about recovery from an eating disorder, but for now I will leave it there.

I hope that this informs at least one person. Helps someone understand that recovery isn’t rainbows and butterflies all the time. Yes it has some really amazing days full of freedom — those are usually the days you hear about. But don’t get me wrong, those days can be very far and few between.

I hope this has cleared up at least one misconception regarding your thoughts on recovery.

Please also keep in mind this is based on my own experience throughout recovery and all journeys differ.

Follow this journey on the author’s blog.

A version of this story originally appeared on Nourish Balance Flourish.

Getty image via Punnarong.