What an Eating Disorder in Recovery Sounds Like

 Photo Credit:  Ravi Roshan

Photo Credit: Ravi Roshan

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 unlikely 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 than not, I’m still battling it. I have to work hard to stick to my meal plan and not give into “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.

And 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?

The 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…

Joanna Kay is a New York City writer and social media professional in recovery from a 14-year battle with anorexia. She is the author of The Middle Ground, a blog that chronicles the period between completing treatment and reaching full recovery. Having encountered many hurdles accessing treatment, she also writes frequently about insurance coverage and other urgent issues facing eating disorder patients. Joanna is a mental health advocate with the National Eating Disorders Association and writes and speaks widely about the recovery process. Visit her blog.

Joanna Kay

Joanna Kay is a New York City writer and social media professional in recovery from a 14-year battle with anorexia. She is the author of The Middle Ground, a blog that chronicles the period between completing treatment and reaching full recovery. Having encountered many hurdles accessing treatment, she also writes frequently about insurance coverage and other urgent issues facing eating disorder patients. Joanna is a mental health advocate with the National Eating Disorders Association and writes and speaks widely about the recovery process.