The "Real" Purpose of Medical Testing

3 days ago I underwent a sleep study and a daytime sleepiness study, as one more medical test to better figure out what medications and treatments I should pursue.

Here is how this test goes:

I report to the Sleep Center, where electrodes and wires are placed all over my head, face and body, attached to a portable unit that I must carry with me at all times. It takes about 35 minutes for the attendant to attach all of the electrodes with a heavy glue.

I sit and read, watch TV from a chair. Then at 10:30, I am ordered to lie down in bed, lights out. The camera zooms in on me, and a voice over an intercom tells me which way to move. Very sci-fi. Then, "go to sleep."

Sleep isn't easy because the air conditioner is broken and I keep waking up in a sweat. Mercifully the attendants bring in a fan. Somehow I do get to sleep. Then I'm woken up again for some procedure. Back to sleep. And just when it's restful, then at 5:45, I am awoken, bright lights on, and must immediately get out of bed.

I'm tired. But now I have to somehow stay awake. I have brought books to read, there's a TV. All I can think about is sleep.... The camera follows me to make sure that I am awake. As soon as I start to slouch and lie down, or my eyes start to close, desperate for a little rest, then someone runs into the room and makes me get up and stay awake. Then, after a few excruciating hours, where all I can think about is rest, there is a "nap test." I get to go to bed, lights off, lie down..... ahhhhhhh. It feels so good, I'm asleep in minutes. And just as rest has come over me, the bright lights snap on, people come in the room, and I'm ordered out of bed immediately and have to stay awake again.

All day long this cycle repeats -- forced to stay awake, then allowed to sleep just long enough to feel it's sweetness come over me, then dragged out of bed again and forced to stay awake. All I can think of is the next nap time and how many moments of sleep I can steal before they come for me.

Sure, the accommodations are very comfortable and quiet, and the food is good, but I can't help feeling like I'm in a prison torture chamber. Sleep deprivation and disruption of circadian rhythms is a time-honored torture method for breaking down prisoners. Every time the cheerful orderlies burst in to get me out of bed, every time I hear the camera zoom in on me to see if I'm asleep, I am filled with an irrational, involuntary, desperate desire to bargain with them, to confess. What do they want from me? They can have it! I'm ready to talk! If I tell them what they want to know, will it do any good? Will they actually let me sleep?!

Which brings me to look back on all the torturous medical tests I have undergone in the past 3 years. Each level of testing seems more excruciating and humiliating. And I think this is the real purpose of the design of these medical tests -- to test just how desperate the patient.

Because anyone who wasn't at the end of their rope, and willing to do anything to get well, would not put up with this, but just say, "Forget it, this isn't worth it," and refuse to comply. I know if anyone had suggested most of these tests 7 years ago, I probably would have just said, "Nah, I'll live with this illness."

I imagine all the doctors gathered in a room behind some one way glass.
"She's back. Damn, we can't do anything to cure this patient, and we can't get rid of her. Are you sure she's that sick? Can we scare her away? Oh yeah, I've got a really good 'test', let's see if she is willing to go through with it. ..... Wow, she did that test. She must really really want medical care. Hmmm, OK, well, then I have another test lined up, let's see if she still thinks it's worth bothering us for our time after THIS one! ...... Damn, she put up with that. Amazing. How are we going to get rid of her now? Oooh, I thought up something really evil....." and so forth.

It began with the usual needle sticks for blood draws. I never had a needle phobia, I was one of those people who always was intrigued with the human body and watched the blood draws up close. But years of repeated needle sticks and IVs, not to mention the 3 or 4 sticks it usually takes, and those attendants who don't want to waste a stick, so if they miss the vein, they will dig the needle around in my arm, trying to catch a vein with the sharp edge...... I'm officially needle phobic. My blood pressure (never a problem before) rises automatically in the chair.

Then there were the urine tests. Nobody wants to hold a cup in the urine stream and collect their urine (well, if anybody does enjoy this, I don't want to know about it.) And then wandering around the office or hospital trying to find the person who wants one's urine? I have spent so much time carrying around little cups of yellow liquid, that I can no longer drink lemonade or mountain dew without a gag reaction (well, maybe that is a normal reaction to mountain dew?)

Apparently I did the urine tests a little too smoothly, because the next doctor had to up the ante with a 24-hour urine test. In this test, I am issued a big plastic jug, and for 24 hours every time I need to pee, I have to pee into the jug. In between peeing, the jug must be kept in a refridgerator. It's a workday, so this means that I have to carry a jug of urine around the office, and keep it in the lunchroom fridge. If you want to know what carrying a jug of urine does for your poise and social standing.... well you can imagine. The only good thing I can say about that experience is that nobody stole my lunch that day.

I thought the 24-hour urine test would prove my dedication to following doctor's orders, but after a few years I think it was time for the medical establishment to set the hurdles higher again. Since then, there have been breathing tests that locked me in a glass box while I asphyxiated, tests that dug around in various parts of my anatomy that I consider private, and at last the sleep test.

I've tried to think of this as performance art, I've tried to imagine what it is like to have a medical sexual fetish, but ultimately, I can't find a way to put a positive spin on this. The best I can say, is that with a certain bravado, I'm going to vault any hurdle the freaky medical testing people put between me and treatment.

I just shudder to think what could be coming after the sleep test.