I think of the way this disease smolders inside someone, the way it waits inside of you, rising and falling within your consciousness, too soft to concern you, too sharp to quite ignore. I think of how early people said those words to me - "eating disorder" - and how crazy they sounded at the time. Being me, I found every piece of written material I could on the subject and read it voraciously. I wonder now if that makes it my fault. Did I, at their urging, determine what an ed was, and then develop it? I remember talking about the illness months or even years before certain behaviors started, saying I needed them, saying, "I should have seen years before why this was the perfect illness for me." When people ask me when I got sick, I don't tell them the date of my diagnosis (mid- January 2001.) I tell them them about how anxious I felt since the beginning of my memory, about mysterious stomachaches all through grade school, anxiety never treated. I tell them about middle school, losing my appetite to depression, liking the control of not eating. I tell them about not sleeping either, waking myself up too early, and then eating far more in that morning than I would in the rest of the week's days. I tell them my eating disorder, specifically, began some time around seventh grade, though it wasn't until eighth that people suggested it, and it wasn't until sophomore year, I was diagnosed. Diagnosed with phrases that made no sense to me, phrases my doctors looked me in the eye to disclaim because the insurance company required they use them.

I went from allowing myself [#] calories, to [#], to nothing. The goal was to eat nothing, but I didn't have "anorexia" diagnostically because I wasn't at a dangerously low weight. (How do they think people get there? Why do we diagnose based on the results, instead of the symptoms?) I had "bulimia" kind-of-sort-of because I did purge what I ate, and in my relative scheme of food, I considered it a huge amount. Of course, I had only just started that when I was diagnosed, so technically, the three months required of that behavior for diagnosis (Three months! "Let's just let it do some damage first, and then eventually we'll get you help") weren't quite fulfilled either. And since I'm female, I should have lost my period before getting any help, or at least before getting any financial assistance. That's what the insurance companies diagnostic textbook looks like: hard, cold fact. Irreversible damage like menarche in women, bone density loss (significant as in osteoperosis), skewed electrolytes that lead to heart attacks. That's where the insurance company will cough up the money (though only for a week or two in a hospital ward, not for an intensive residential program that could actually help.) The doctors, the good ones, will call it sooner, call it before you're dying (physically- the emotional, mental death comes so much sooner), and say you need help. And if you end up in one of those hospitals or one of those residential programs, you'll learn to see the sickness where the bones aren't protruding, where the weights are normal or above normal. You'll learn that every patient who enters the adolescent eating disorder ward believe she or he hasn't gotten sick enough to deserve it. Believes she or he will be stared at and ostracized by other patients. "What are they doing here? They aren't even thin!" You'll learn to see sickness in thought patterns, words, avoided feelings, and soaring health in places where physical stability lags behind. I used to wonder why they diagnosed on results, rather than symptoms...now I wonder- why symptoms, rather than thoughts? Rather than feelings? If I tell you I think I'm poisoned and need to be punished, restrained, controlled - will you really respond with, "If this is still a problem in three months, or if you lose a signifiant amount of weight, we'll deal with it...?" That's what doctors and insurance companies say, almost always. And it's terrifying to hear, it's heartbreaking to hear, when you've spent so much time in pain, and hating yourself, and wondering why in God's name you can't have help now. When they said, "you don't have an eating disorder," I heard, "you still can't have help." Fifteen years of undiagnosed anxiety, of panic attacks, of depression, that couldn't cause anyone to care. I needed help, and just like I couldn't be good enough to deserve it, (I thought then; I always was) I couldn't be sick enough to earn it.

When I went residential, when I saw how many girls and women and boys and men had asked those same questions and felt those same pains, I quit wondering about symptoms and responses, and started seeing the disease in thoughts and feelings and the methods in which we handled them. And if I were the Diagnostic and Statistical Manual V, I wouldn't talk about percentage of weight loss, bone density, menarche, purges per week, or anything else along those lines. I would say, "How do you feel?" and when I heard the answer, I would say, "You deserve to have help with that. You deserve not to fight that alone." I would deal with eating where it had become a problem, but "eating disorder" - the label - has become a problem, too. It's become a way of getting help that requires strict and certain means. If I don't meet them, am I really sick? Was I ever really sick? I have all the horror stories, all the tears, all the feelings my friends with "real eating disorders" describe, and still I question this. I was hospitalized, admitted into a facility by five or ten staff members after seeing as many health care providers outside, and I still couldn't believe I was sick. I was faking, or I wasn't that bad. They'd see in time, and they'd hate me for lying. (For trying to get help before I'd had a heart attack, before my brain had collapsed with stroke.)

They didn't see that- and they never would have- because I am sick. I do need help. And needing help isn't dependent on having an eating disorder, but I don't care whether you have one or not, if you're struggling, if you're even *starting* to deal with (or avoid) your life through food, then you damn well deserve attention. I will say you need help. I will say you deserve help. I will say, if this is a phase (which they told me, and told me, and told me, until I couldn't even look at food without crying, without leaving the room, without going to sleep) - or a means of getting attention, then the world had better give you that much. When did attention become such a horrible thing to need? When did support and help and nurturing and guidance become so unnattainable - become prioritized for people with eating disorders?

I see this disease in people who think the way I thought once. I see this disease in people who consider it. I see this disease in people who "choose" it because they want to lose weight. I know that wanting to lose weight is a symptom, not a cause. I know that an illness with so much of its strength in the false "control" it provides could not feel beneficial if it weren't thought to be under the control of the sufferer. Of course, we think we want it. Of course, we think we're choosing it. How else would it keep us from knowing we've already had it some time?

I've heard people with eating disorders say they wish they had cancer. Not because it's a disease that will help them lose weight but because it's a disease that will be recognized as such. When cancer cells are found, no one says, "ok, ok, but let's just see if a tumor develops before we act." To me, the thoughts, the need, the "desire" are the cells. If you want it, you have it, and that's not a good thing. It takes more than wanting it gone to be rid of it. It also takes lives.

My dad has what they call "disordered eating." He compulsively eats foods that aren't exactly healthy. He eats emotionally and sometimes to avoid emotion. He doesn't define his life, his worth, his needs and his world through food. He doesn't consider food an obstacle in his day-to-day life; he doesn't consider it a struggle. At times, he has, and at those times, he's gotten help. Sometimes, he says it was an eating disorder; sometimes not. No one diagnosed it as such. So where are the lines, the categories, the quick answers? They don't exist in my reality. They exist in the diagnostic and statistical manual, certainly. But all I've seen that manual do is take away from people the help that they need, and in doing so, any remaining belief that they personally deserve it.

I don't ask people, when I meet them, if they have an eating disorder. I ask them who they are and how they feel. Sometimes, over the course of knowing them, I develop concern; sometimes, that concern has to do with the way they interact with food. I bring it up with them; I know I'll seem crazy if I don't. (I'll start acting weird, worried, protective.) When I do, my question, isn't really, "are you sick?" It's more simple, more "how are you?" How are you? How are you alive? How are you doing? How are you dealing? How do you feel and feel safely?

It's those answers that interest me, and those questions I continually ask myself. I eat well now; I still have an eating disorder. I don't think only the dying need help, and I don't think only the dying deserve it. I died emotionally, mentally, spiritually, but that's not tested when you go in for a check-up. I ask now what I wish I'd been asked then. I ask, "What do you need? And do you know you're allowed to need it?"

Helped to answer that, helped to fulfill the conditions of my answer, I might never have developed an eating disorder. I might never have developed a disease. But without those behaviors, those specific symptoms, I'm still considered sick. The thoughts and feelings behind this are enough to keep me in therapy; why weren't they enough to put me there?

I know what it's like to want a disease. It's strikingly similar to what it's like to have one.

Mary

[this entry came up for me in part as a response to these two entries.]

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