THAT DAY

My housemate Jamie limps in. She twisted her ankle badly in ballet class. "I'll be out for weeks." Her friend Lindy comes over to console her. They tell stories of clubbing, dating and sex. I listen but have, of course, no tales to contribute, since I'm too sick to date and have been for years.

Jamie's pain has a time limit--she'll dance again. Mine? Sick for over a decade now, and not getting better.

THAT NIGHT

Theater. Dark. Its spotlit heart a circular dais. A ring of women, tall, facing in. Pastel-leotard dancers all stunning. Talk in turns. I try to join, but one tells me: "Just observe. Bike around our ring." Let down, but I do. Odd thing: when women speak, they float up two meters aloft, to land cat-soft when done. No leap! To speak alone uplifts. A lanky gap-toothed small- headed girl with a cheetah's long legs explains why I need to skirt the sexy circle (though, awake, it's gone). She adds some wise personal advice, an oracle I know I can't act on--not til I'm well. So drained. "I gotta heal!" I blurt, abike, in the orchestra pit-- and shudder awake with the force of it.

NOTES IN THE MORNING

• Ring, magic, advice: this is an oracular ritual!
• Circle the clique: Jamie and Lindy weren't excluding me; my lack of life experience did that. And it's illness that's narrowed my experience.
• Speaking causes levitation: speak up! I tend to be quiet and listen; but speaking out lets you soar.
• Wise personal advice I can't enact: my dreams are eager to guide me, but illness makes it moot; I lack the resources to act.
• "Gotta heal!" My doctors talk as if I have a vague "condition"--stress, migraine, depression, fatigue--whose symptoms are to be "managed". Wrong. Illness is strangling me--choking off life experience, blighting efforts to change.
• ACTION: If doctors can't be bothered to figure out the cause, I have to.

Not easy. I had to throw out what doctors had told me, and test myself. I found they'd missed a thyroid problem, and a serious chronic infection, and a violent gluten sensitivity. Slower to discover an underlying genetic disorder, Ehlers-Danlos Syndrome--admittedly rare, but known for a century, with distinctive markers you can verify in one minute--if you bother to look. They didn't. Not just time-shortage or laziness, but ideology too. Bayesian logic, taught in med school. "If you hear hoofbeats, think horse, not zebra." But if your patient is a zebra, your training blinds you.

One way to quantify medical horror stories is simply years to diagnosis, and mine's extreme: over a decade each for four serious illnesses, and for the worst, EDS, it was 53 years.

I'm a lot better now. My worst remaining symptom: mistrust of doctors. So I speak up. And rise up.

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