Please Don’t Ask Me How Long This Will Take

Image Credit: KijaDoll

An open letter to our Supporters,

We had the fight again — the one that happens when our heroic patience finally deflates, and our frustration comes hissing out until it permeates through the house. You want to know: How long is this going to take? How long are we going to suffer like this?

You are tired. You are trying your hardest and we are draining our resources, but nothing seems to do the trick. You don’t know if there is ever a “right thing” to say. Most of the time, you feel like you’re walking on eggshells, afraid that your well-intended comment is going to trigger some irrational fear or anxiety — or worse — in me.

You’ve tried reasoning with me, but you found out quickly that an eating disorder has its own logic and thus it doesn’t respond to reason. You try to put yourself in my shoes, hoping that empathy might translate to energy and keep us both going. It’s impossible to understand, though. How could I struggle, you wonder, with something so basic as eating, something we’re literally born knowing how to do? How long will it take to just click?

You want to know when are things going to get better — when am I going to better?

You’re frustrated. I understand. Your feelings are justified. (And even if they weren’t, you would still have a right to feel however you do. Lord knows that is what I’m trying to believe for myself.)

But please don’t forget: I feel the same way that you do. By the time you finally lose it and tell me how frustrated, exhausted, exasperated, and scared you are, I’ve already said those things to myself. (Several times. Just that day.)

We have a common enemy in this. It hurts me just as badly to live with this monster as it does for you to watch it wreak havoc on me. I want it gone, too, and I’m trying my hardest to make this stop. So please, whatever you do, don’t ask me how long will this take.

Because I don’t know.

I don’t know.

I.  DON’T.  KNOW.

Surely you know that if I could simply erase this illness and leave no trace of it, I would do it. No disordered thoughts, no temptations, no lapses whatsoever. No more therapy appointments congesting my calendar. No more signing up for school and then dropping out because I’m still “not well enough.” No more quibbling with this or that doctor just to cling to a semblance of autonomy over my health.

Free from the embarrassment of inching down grocery aisles trying to choose between the “right” foods and the “safe” ones. From the dread I feel when I see a tray of cookies at the staff meeting. From the anxiety that wakes up each morning as I think about another day of fighting the voices, of struggling to find that mysterious balance between forgiving myself and pushing myself. From the unrelenting sense that I must be either insane or heartless for putting us through this.

All of it, just gone. I would do almost anything for that gift.

But I can’t. And so, when you ask me how long this recovery is going take, what I hear in that question is confirmation of my deepest fear: I am a burden. You are as fed up with me as I am.

It’s not that I want you to hide your fear or sadness, or even your anger (at my eating disorder — not at me). I need to know your feelings because I need to be reminded that my life isn’t the only one at stake here. That’s critical, because in the moments when I can’t find it in me to recover for my own sake, I can do it for you.

I guess what I’m saying is that I’m not trying to be stubborn. I’m not trying to hurt you. I’m just trying to get through this.

Thank you for your support, your loyalty, and your faith in me,
Your Loved One

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.

What an Eating Disorder in Recovery Sounds Like

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.

Yes, Recovery Really Does Get Better

Photo Credit: Kate Williams

Pushing Through the Final Phases of Recovery

I haven’t written in a while, you might have noticed. I relapsed, and I was too ashamed to admit it here.

It was a quick, steep backslide, and the trigger was very specific: I weighed myself. I went home for Christmas and encountered a scale. I thought I could handle the number. I couldn’t.

I freaked out. My nutritionist dissected my meal plan in order to show me I wasn’t eating excessive amounts. We discussed the natural fluctuation in weight that bodies undergo. We even discussed weight loss and how it’s not necessarily eating disordered for people to decide to lose a few pounds — provided that there is an actual goal in mind, you don’t lose weight despite having no physical resources to spare, and you don’t withhold nourishment your body needs.

Looking back, I realize no one actually gave me a green light to lose weight. We were only speaking theoretically. But all I heard was “not inherently a problem…” and off I went.

Do Not Underestimate a Relapse

The severity of an eating disorder is never undone. Every relapse brings you right back where you left off, and so you resume the old behaviors and then go a little further. The good news is that recovery, too, is never undone. So, each relapse is just a little bit easier to bounce back from.

But that’s why relapses can be quite dangerous — you think that you’ll “just skip that one meal,” or do whatever it is that your eating disorder demands, and it’ll be no big deal. Or you think that the consequences can’t be THAT BAD, because my god, how many times have you done that before? Why would this time be any different?

(You can hear the eating disorder in all that “reasoning,” right?)

Eating disorders don’t work like that. Your body doesn’t work like that. Even if you think any damage you might inflict will be minimal, your body nonetheless suffers from the cumulative effect of years of abuse.

Long story short, my treatment team didn’t waste time waiting for me to see the light. A plan was promptly put in place to begin a meal support program at Columbus Park Collaborative alongside bi-weekly medical management (blood draws, weigh-ins, heart monitoring, and so on).

That is what I’ve been doing for exactly one month today.

30 Days Symptom-Free: I Feel… Better?

I feel a bit apprehensive saying this, but… I am doing so much better.

I don’t just mean “better” in terms symptom reduction, because lord knows I’ve beaten symptoms into remission before. Something feels different this time around. Something is working. The insights, the skills, the goals, and so on have abruptly started to make sense to me. Finally, after two and half years, the recovery behaviors that I’ve been studying and practicing feel less like awkward, isolated gestures, and more like one cohesive movement.

Or maybe — to use a more personally meaningful metaphor — it feels like finally understanding a foreign language. I’m moving from merely memorizing vocabulary and grammar to speaking more freely and fluently. The words no longer feel as awkward on my tongue. Sometimes I even manage to think in this new language.

I’ve had important insights these last few weeks about my own journey and how the eating disorder functions in my life. There’s too much for one blog post. But I will note that I can think of at least one difference between this time and all my other treatment/recovery attempts. It has many names among the various recovery communities. I’ve heard it called surrender, as well as trust. But I’ve been calling it “faith” — an unusual word choice for me, since that word is laden with a religiosity that I’m not actually applying here.

Whatever one calls it, it is absolute faith in the process. It is the final (I hope, anyway) acknowledgment that my way does not, never has, and will not ever bring me inner peace.

It is the belief that there is some other, better lifestyle beyond the one I’ve been inhabiting.

Most important, it’s the recognition that I can access that desirable lifestyle, but only if I start doing things radically different than I’ve been doing them. This means eating meals and snacks, reaching out for help even when it feels uncomfortable or intrusive, and being curious instead of neurotic about my own feelings.

It means facing every fear every time because that’s the only way I’ll surmount them.

What Comes After Anorexia?

This sounds overwhelming — and sometimes it is — but, ironically, this approach has become for me the wall that protects me from past failures and future fears. It makes me so hyper-focused on doing the next right thing that I am able to put aside any and all thoughts of failure.

Keeping that intentionally nearsighted faith allowed me to battle through that initial, panicked period of contravening old habits and behaviors and forcing myself to go against my own inclinations. And that’s what I did — I went against every urge, every time. No exceptions. And believe me, that was really-really-really-effing-hard. But I did it. 

Apparently, there is indeed another, much nicer, side to that experience if you don’t quit halfway through.

Perhaps it is because I’m realizing that there isn’t much more my eating disorder can threaten to take away from me… things can’t get much worse by trying all that I’ve been afraid to try in recovery. So, I’ve entered this space in which I’ve given myself permission to keep doing the “recovered” thing to do, with the reasoning that I might as well give this my all and worry about what that means when and if it comes to that.

I’m not sure I’ve ever done that before, given that I’m finding myself in this pleasantly unfamiliar space. It’s a little quieter here, a little more hopeful. Perhaps this is what’s just past the halfway mark of the middle ground.

Perhaps that’s what it takes to make that extra push forward: single-minded, unrelenting faith in the process you’ve been taught.

I’ll let you know, I guess.

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.