"I am tired of this boring disease."

I have had it about up to here with my body.

I first got sick somewhere between the ages of nine and eleven; first slowly, as various genetic codes were triggered by stress and puberty, and then very quickly, as I gained 50 pounds in the space of six months. I stayed sick, and kept getting sicker, until my mom finally dragged me to her doctor, a woman flaky even by my standards back then. She looked at me, blinked, and said, "We'll have to wait for your test results to be sure, but you're probably severely hypothyroid."

Hashimoto's thyroiditis is, essentially, a disease of self-loathing; my immune system thinks of my thyroid and the hormones it produces as an invader and attacks it ruthlessly. My thyroid ceased to be useful when I was fourteen, producing only the faintest trickle of hormones despite my pitiutary's panicked calls for more of the hormones that regulate nearly everything that my body does, from my body temperature to how quickly I digest food.

One of the more serious side effects of not enough thyroid hormone (along with weight gain, heart arrythmias, and eventually death) is a sort of fuzzy depression, a twilight space where you wander ceaselessly, wondering where you left your hat. I had my first suicidal thought when I was eleven. The truly black moods came later.

I have no idea if I was the subject of hushed conferences between my parents; if there was a decision, it was to let me alone and see what happened. I was left to decide whether or not I was going to live.

Eventually, i decided in favor of life, though the decision was pretty tenuous there for a few years.

But tell a teenager that she is ill, and in a way that can only be treated, not cured. Tell her that she is going to be ill for the rest of her life, that she is never going to feel truly well, that the body she has, fat and aching and sore, is the one she's stuck with for the rest of her life. My body belonged to everyone who saw fit to comment on it, so different from my lovely peers with their lithe bodies and their tendencies to play sports. I got tired of explaining I was ill and so stopped, burning with shame every time an unthinkingly cruel comment came out of someone's mouth yet again, shame for something that wasn't even my fault. I stopped eating, for a while; for a while after that, I only ate fruit. I was doing a good job of taking over the self-loathing that my illness had started.

I'm not sure that counseling for people with chronic illnesses was even invented back then; even if it had, it wouldn't have entered my parents' minds to send me there. I was not taught how to care for myself, wasn't taught the delicacies of caring for a body already battered by its own immune system, wasn't given any hope in the face of what felt like countless years of pain that were ahead of me.

And now, well, I'm tired of it.

Like this article says, "But the trouble with diabetes (or cancer or AIDS or drug addiction or hepatitis C or quadriplegia or any damn thing) is that you can be brave all you want, and you've still got it. You can be a really, really good diabetic, a straight-A gold-star blood-sugar-checking maniac, and you've still got it.

"It's boring. You people out there having to take pills five precisely calibrated times a day, or taking an hour to get out of the house because of certain irritating limitations, or having to go another day without even one hit on a crack pipe just to take the edge off -- you know what I mean. Being good today gets me to tomorrow, when I have to be good again. What's that about?

"The only upside is that I actually get to see tomorrow. That sounds like a pretty powerful upside, continuing the good life deep into the 21st century, but after four years or so you begin to think, well, you know, hmph. Nothing more coherent than that. "

I'm at the hmph stage, after spending two-thirds of my life living with this illness.

I do not know what it is like to be well. I do not know what it's like to be a "normal" size, because I've been fat since I was ten. I vaguely remember what it's like not to have to take medicine every morning; more recently, I do remember what i's like not to have to take medicine literally morning, noon, and night.

I don't know what it's like to not go into mild hypothermia after sitting in one place too long. I don't know what it's like to trust my body. I don't know what it's like to like my body, much less love it.

I can be good about taking my medicine, good about eating the diet that is tailor-made for people who are hypothyroid and cannot lose weight easily. (It's known as the "if it tastes good, it's bad for you" diet.) And my reward is to wake up tomorrow and be good again, doing the exercises that hurt, taking the medicine that tastes bad, drinking enough water to float away and avoiding fat, high-glycemic carbohydrates, and soy.

I try not to be angry, but I am. I try to make peace with this, as it is evidently simply my bad luck to have been born with thyroid disease in both sides of my family and have come down with it about twenty years earlier than most women do, with devastating side effects on my health and self-esteem. But every time I make a tenuous peace with it, through diet or exercise or meditation or whatever, an angry little voice raises its head and says, This wouldn't be so hard if you were normal... And I'm off like a shot again.

For a while there, I was eating "normally". 1500 calories a day, low-fat, don't worry about the carbohydrates, just enjoy the variety. And I enjoyed myself immensely. Yum, fruit! Bread, double yum! Sandwiches! Casseroles! Homemade bean burritos!

And the scale began to creep upwards. And, worse, i began to have massive blood sugar swings--I was afraid to let myself get hungry, because if I was hungry I felt like I was about to faint. I couldn't drive my car while I was hungry, or really do much of anything. I finally chucked the low-fat diet as a failed experiment and went back to the diet that prevents the blood sugar swings--low-carb, low-fat, heavy on the protein and the leafy greens. Nothing tastes very good, but I no longer fall into a murderous rage at precisely 2:30 PM every day.

It's an improvement, I guess.

I've tinkered with it some, adding in the concept of a "free day" once a week to keep me from going insane from lack of bready goodness, deleting the prohibition against fruit, deciding that the evils of fructose were more than balanced out by yummy yummy vitamins, and other small adjustments.

I think about these things more in the fall, when I'm settling in for the winter and the pace of work invariably picks up in anticipation of the desolation that is December in the software industry, when everyone is taking the vacation they forgot to take earlier in the year and they are now in danger of losing entirely.

(Plus, there is alcohol and Christmas gatherings and well-meaning relatives who ask you what you're doing for a living these days, and who blink in baffled exasperation when the natural answer, which is all acronyms with some verbs interspersed for variety, slides out of your mouth. Eventually, you just shrug and say, "I make help go" and wander off to find some more eggnog.)

I am still hanging in here, fighting the good fight. With bared teeth and unsheathed claws, it is true, but I'm doing my best.

It remains to be seen if it's good enough.

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