What an Eating Disorder in Recovery Sounds Like

Posted by on Mar 4, 2016

eating disorder

Wait… You’re not over that eating disorder yet?

During National Eating Disorders Awareness Week (NEDAwareness), I did a fair amount of preaching to the choir about early intervention. Presumably, some of it reached the general public, but since the overwhelming majority of my followers — if not all of them — are people who have been affected in some way by eating disorders, most weren’t new to this conversation.

That’s not a bad thing. This population needs education and awareness, too. However, a somewhat jarring conversation at work toward the end of NEDAwareness Week alerted me to the fact that I am very selective about when and where I divulge my eating disorder story. Perhaps I spend a little too much time with the choir instead of the rest of the congregation.

Basically, my immediate coworkers were discussing how guilty they felt about eating the pizza lunch we were surprised with that day and how much extra time they’d need to spend in the gym for it. Soon after that, another person made a comment directly to me about skipping the meal.

The conversation was neither atypical nor all that problematic. I probably took note of it only because 1) I have spidey-senses when it comes to these things, and 2) I was totally immersed in eating disorder chatter that week. To my knowledge, none of my coworkers struggle with eating disorders, so it’s unlike that comments of that ilk will send them into downward spirals of self-loathing and self-abuse.

However, hearing it, being included in it, and then keeping quiet made me realize that despite my efforts to be an advocate and activist for all-things-mental-health, I have a selectivity problem:

It’s easy to talk about eating disorders and recovery with fellow sufferers/activists or when I’m in their presence; not so easy when I’m out here on my own.

I mean, I do talk about eating disorders in my “real life.” People know that I’ve struggled with this illness for a long time, that I had to take a lengthy medical leave to undergo treatment, and that I devote a substantial amount of my personal time (and vacation days) to mental health advocacy and activism. But as I listened to that conversation — and said nothing in response — I realized that, alongside my advocacy, I still harbor some shame about my illness, and I try to shrug off the struggle when things get too uncomfortable. Or I pretend I don’t hear… or that I don’t care.

That nonchalance speaks louder than what I write on the internet.

Let me make one thing very clear: I’m not saying that the people in my life are ignorant or insensitive. I’m also not saying that I need people to censor themselves in my presence.

My sole observation here is that I live a kind of “double life.” To all of you here in the blogosphere, I am someone battling daily to maintain my recovery. To everyone else in my “real world,” I am someone who had an eating disorder, but am doing much better now.

Time to clear that up.


What the eating disorder sounds like to me

Trigger warning — mention of some eating disorder behaviors to follow

I’ve admitted before that in my “offline life,” I sometimes speak flippantly about my eating disorder (my struggle in particular, that is — I’d never want to cast anyone else’s battle as superficial or humorous). I do that out of self-defense and some embarrassment. I want people to believe that food is not a big deal for me. After all, it’s food — it is a completely unavoidable (and to most, enjoyable) part of being human.

But in fact, it’s a very big deal to me, and it’s the least humorous aspect of my life. It’s exhausting. It stresses my already-super-stressed husband. At times, it even seems to irritate my treatment team.

But the reality is that, more days that not, I’m still battling it. I have to work hard to stick to my meal plan and not give in to “eating disorder thoughts.”

Mornings still begin with the urge to inspect every inch of my body to reassure myself that I haven’t magically inflated in the last 24 hours (particularly my stomach — which is problematic when, as a woman, bloating is part of life). Getting dressed can be a nightmare, because I still own many of the same clothes that I wore when I was anorexic (steep medical bills mean no wardrobe budget). Except now they fit, and putting them on usually sparks a bodily memory of how much bigger these clothes used to be — how much smaller I used to be. Usually, I end up changing into something else…and then something else after that…and then eventually find refuge in leggings and loose-fitting shirts.

eating disorderAnd then there’s the meals… Breakfast usually goes okay, although I’ve yet to diversify beyond the same two “safe meals.” These two breakfasts guarantee that I’ll be hungry by lunchtime, because eating a meal before my stomach starts to growl still causes me anxiety — I rely on that growl to give me permission to eat, even though I know hunger manifests in other ways than physically feeling it.

Lunch is tricky, too, because if I don’t pack one (which I usually don’t, because my mornings get swallowed up by the mirror battles), then I struggle to figure out what to pick. What if dinner ends up being pasta? How will I know how many carbohydrates to include in my lunch? Should I just focus on lunch and then adjust at dinnertime? But wait, that’s not what normal people do — normal people go with the flow. They don’t pick their meals based on what they’re eating later on… or tomorrow…

But then OH CRAP there are cookies at this meeting… What do I do? If at that point I already had lunch, I don’t feel hungry, so I don’t want to eat one…..but if I haven’t had lunch yet, I worry that eating one will make me feel full before I can get to the “real” food…..then again, I don’t need to stick PRECISELY to my meal plan — I’m allowed to be a little over or a little under on a given day, because it all balances out in the end (or so I’m told)….it’s okay to just indulge in a cookie or two….but I’m not sure I even want one…..but what will everyone think if I don’t have one?…..what will they think if I do?

Then there are days when the anxiety is too much and I take the safest route possible at lunch: the emergency protein shake. My nutritionist and I have agreed on a particular brand that has sufficient calories and nutrients, and that feels safe to me because 1) I know precisely what is in it, and 2) it’s liquid, so I don’t feel as full as when I eat a real meal. But then I feel like a failure, because what kind of 27-year-old gets too anxious to eat solid food?

But I am a 27-year-old, and I live in New York City, so on top of everything else, the most common social venue among my friends is the bar. Then I really start to worry about how I’ve chosen my meals throughout the day, because I can’t always prepare ahead of time to account for the alcohol calories….but then, I shouldn’t do that anyway, because alcohol does NOT count in my meal plan, since alcohol calories are not nutritive and thus I’m not supposed to “compensate” for having drinks with friends. But if I don’t, then I’ll feel too full, and my entire focus will be on how uncomfortably big I feel whilst nevertheless ingesting even more. And uggghhhh….THEY’RE STILL CALORIES. THEY COUNT, DAMMIT.

And god forbid I encounter a scale……….

THAT’S what I weigh??? Why hasn’t anyone told me?! Oh my GOD, HAS THIS BEEN TRUE THIS WHOLE TIME?!?!

Then there’s the iPhone 6 I just got, which apparently has a STEP TRACKER built into the software….and I know I shouldn’t look at that, because whatever number it registers is going to lodge in my head and stay there until I meet that 10,000-steps-a-day goal that everyone swears is so critical for health and fitness and (more important) maintaining weight….but then, what the heck? THAT’S my average daily step count?? I live in New York City for pete’s sake…..


The long road of re-habituation

There are still so many automatic thoughts and behaviors. I see cookies at the meeting and automatically bark at myself, “Stop it. Get in control of yourself. You can’t have that.” Then I catch myself, and I remind myself that I have a New Philosophy to internalize: starving is not a mark of discipline or strength; real strength is saying “no” to the eating disorder — to eat even when it viscerally feels like you are doing something wrong, because you’ve spent half your life training your brain to respond that way.

Often, though, that narrative just makes me feel more ashamed, because there are still times when I don’t tell it “no.” Sometimes I take the easy way out, because I just don’t have the energy to contravene such strong internal urging. And what is the implication of that, seeing as I’m teaching myself that true strength lies in disobeying the eating disorder?

eating disorderThe implication is that I’m weak. Powerless. Undisciplined. Selfish.

Sometimes I wish there were a brain surgery I could undergo — something that would explode the part of my neural network that has come to seek starvation, rewire my motivation and volition, and get the reward centers to light up for food instead.

No such surgery exists, of course. So I just have to persist in the long, arduous process of re-habituation. A habit that runs up against cultural messages about diet and weight-loss… messages that run up against all my therapies that tell me to listen to my body…. therapies that run up against my internal urges to just do things the way I’ve always done them…. urges that run up against my animal instincts that insist THERE’S NO SUCH THING AS “NOT EATING” BECAUSE YOU HAVE TO PROPAGATE THE SPECIES, YOU DOLT.

This is the average climate in my mind.

What’s scary, though, is that I really am doing much, much better.

So just think about how it was before…

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  1. Thank you!!! Thank you for reminding me that the internal dialogue fighting are not mine alone. That the continual second guessing of everything I do doesn’t mean I am the craziest person in the world. It really meant a lot to me. You do help others! For where I am in my journey, being reminded how struggle can look so overwhelming but still be better than it was is very helpful.

  2. I’m right where you are and still feel lost. At least you have friends to hang out with. You have a life to enjoy and be engaged in. I live alone with 2 cats. I don’t feel I have a purpose or importance in life. So why bother with recovery? What’s going to be different if I do recover? Maybe I should just accept what is and my ugly thinness that on one seems to notice or care about. Stop focusing on the eating disorder and try to keep on living. What’s it all worth?

    • hey Sherry,

      I’m reading this a little later into the year and i see you commented here in March. hope you’ve been well in the time in between. you may feel like you have no importance of purpose in life because of the hell this disorder is putting you through – trust me, I’m in recovery right now and i feel that sometimes. but don’t ever EVER believe that. you must never accept this state for what it is because you have a choice and you WILL be out to see the world and meet new people and enjoy life if only YOU ALLOW YOURSELF TO RECOVER. it must come from YOU. recovery from an eating disorder can only happen if we make the choice ourselves to recover. it’s a mental disorder that we have, and the only person able to change our own minds is us. and if you think you aren’t worth recovery, that’s the ED telling you lies. you ARE worth recovery. you are worth recovery and LIFE, and you deserve all the love in the world, even if you can’t see it right now. if you’ve been waiting for a sign, THIS IS IT. this is the sign for you to learn to love yourself, to reach out and ask for help, and to ALLOW yourself to recover because darling you are so so much more than worth it. i know it’s hard, and i’m still battling this every day, but your worth is immeasurable so don’t talk about “worth” at all, princess.

      in love and light,

  3. Thank you. Just…thanks.

  4. Thank you for this.

    I am very plus-size (“super-obese”), yet have a very similar internal dialogue, particularly during the restricting phases of my day, until it finally caves in to make-up eating at night (more calories than I would have eaten if I’d just eaten my meals on time, and more of it comprised of table sugar and fats.

    Of course, almost no one believes my fear of eating and struggle to eat during the restricting phases, I see their eyes glaze over while trying to look like they believe me and that they are concerned the way I am about it. I’m concerned because the restricting phase will, later in the day, precipitate eating more calories and a super-late night of delaying eating them (it’s 5:30 a.m. and I just finished a much-needed entire pizza because of the number of meals and calories not eaten yesterday. (Unlike an anorexic, I eat enough and more after I delay eating.)

    It’s tough when most people think I +ought+ to be restricting, and should keep it up, or that it is harmless. It isn’t.

    I will share the link to your post with my doctors. You are inspiring me to describe in writing my own daily dialogue, for myself and others. Was this helpful to you to write? Thanks again. You are a good writer and thinker!

    • Thank you for this — I’m really moved by what you wrote. I think you’re incredibly courageous. This is a horrible illness to face — let alone to have to also defend yourself against the people who are supposed to be helping you. I admire you for speaking so articulately about it. And I’m really glad that perhaps my post can help your doctors understand better.
      Yes, do write down your own daily dialogue! If nothing else, it helps simply to see it on paper so that you can understand it a little better, as well as separate yourself from it (rather than letting it swim around in your head and convince you that it is the truth).
      Would you mind if I shared your words in a social media post? I think it is important for others to hear your words. (You will remain anonymous, of course.)
      Many, many thanks.

  5. I’m sharing this with everyone I know. This is so damn accurate, it’s scary.

  6. Thank you so much for this! The morning mirror battle is too real. I tend to spend weeks at a time avoiding certain pairs of pants for exactly that “bodily memory” you describe. Such an annoying mental trap. Reading your piece was so helpful. Continue to take care and be well.

  7. I know others struggle as I do – but I just can’t believe how your thoughts are the EXACT thoughts that run through my own brain. Every day. To the word.
    I am 26, and hold a lot (a lot) of shame for “still being sick” or “still struggling” at this “old” age. Especially in the world of recovery blogs and social media, it feels like the majority of those struggling are in their teens. No negative thoughts to them, of course, but its just embarrassing when I then realize that I’m in the same world and yet 10 years older. This is just to say, I can’t thank you enough for being so honest and vulnerable with us – including sharing your age. I know there are more “older” women out there struggling, but they can be hard to find. Thank you so, so much.

  8. Thank you for your blog. I have the same struggles as a in-remission aneroxic. Some mornings it is a struggle to pick the right outfit, because I still see that same overweight women in the mirror, I will change my outfit at least 3 times. I hardly wear pants because I think they make me look big. I am constantly still comparing myself to other women. It is so hard to make myself eat three meals a day. It is just nice to be able to have a sounding board.

  9. Thank you for this. My wife happened upon your blog and she showed it to me basically saying this is exactly how she feels with her recovery. More often than not the last few months she’s been restricting each day instead of once every few days, so I’ve been concerned. She found comfort in your blog and knowing once again that she is not the only one who struggles. Thank you again.

  10. This is exactly the part of the eating disorder that frustrates me the most. I keep waiting for a day when the daily struggle seems less of a struggle. Your final line – suggesting how much better you are doing now than you used to. I guess that is where looking at the bigger picture helps you see the progress instead taking it day by day where the difference is hardly detectable at times.

  11. Great post, I can relate and in my experience, any plan I ever followed resulted in the feelings you describe, the anxiety, the worry. Once I let go of ALL meal plans and truly ate what I wanted, took the focus OFF the weight, stopped analysing my body in the mirror every day, stopped weighing myself I began to see true lasting changes and I am now completely recovered 4+ years! 🙂

  12. Hi! This post helps me understand my daughter.

    As a person working on a different addiction, I think it is not necessary to tell everyone, but I get the concern to not mislead with silence. The diagnosis is not one’s identity. We choose who to get closer to that we gradually open up with and get to know their struggles to encourage them.

    For me a “lifestyle issues” support group helps a lot. For us the Bible provides a truth
    to filter our thoughts with. I hope all you folks have been growing stronger.

  13. Thank you

  14. I love this. I still feel this, often, but not always. “Alcohol has calories, dammit and what (I’m) 26 year old can’t eat solid food?!” It all resonates too well and makes me think I should get rid of my step tracker. I’m officially in year 7 on this bell curve and only thoughts haunt me now, ED actions are a thing of 3 years ago, but ED still lurks. Beautifully written.

  15. I’m 30 and entering my residency to be a doctor and I hold this heavy guilt of “still having issues” after 16 years. I’m most definitely in the middle ground, I have all these types of crazy tapes by the ED in my head and I’m sitting there with a post-myocardial infarction patient telling them about a “healthy lifestyle” …. while calculating how many calories I will have left for wine with dinner. It’s surreal sometimes. Thank you for writing this, it’s scary and comforting all at once to know we are not alone. I’m most definitely past the “honey moon phase” of recovery and it’s hard to explain to anyone since I don’t look sick anymore

  16. Thanks for this. I look more normal and have clothes from when I was smaller and struggle a lot even though I feel everyone thinks I’m fine!! It’s so so hard to keep going. My boyfriend of 4 years has heard everything and has nothing left to say except that I’m strong in every way so why let this beat me? Being strong is so much better freeling than skinny but why is it so hard to let go of my “comfort” zone of restriction? It’s a daily battle but I always remember the bad times of how I felt when on grips of disorder and that keeps me going x


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