Ten years ago, I went to the doctor. One of the things I mentioned, figuring it was just a really annoying manifestation of the movement disorder that’d recently been identified, was “I keep forgetting how to urinate.”
The doctor snapped back at me, in a tone that took me and my mother aback, “Don’t be silly. Urination isn’t voluntary.”
Unsurprisingly, I kept getting urinary tract infections. At one point my doctor actually yelled at me for not being able to give a big enough sample, even though it was bad enough at that point for there to be blood in my urine, among other signs of a nasty infection.
I get things like that a lot. Both developmentally disabled people and people who’ve been in the psych system get things like that a lot. It’s assumed that we don’t know what we are talking about, or are imagining things. So I spent a long time trying to force, cajole, etc., urine to leave my body. The good part was I had less (but, since it was intermittent, not no) trouble with incontinence. The bad part was that this was worse.
But even though I get a lot of discrimination, I also get things like the following a lot:
Nearly ten years (and a zillion UTIs) later, a nurse watched me struggle for half an hour to give a urine sample despite a full bladder and no infections. She asked me if that was common. I replied (with a huge bunch of nervousness) that it had been going on ten years and only getting worse, but that the only time I told a doctor he’d told me it was impossible. The nurse insisted on getting a doctor to refer me to a urologist.
After a bunch of really nasty tests, the urologist told me that he had located the problem. There was a lot of spasticity in my urethra, the place that urine leaves the bladder. So it was hard to get urine through it when a spasm was going on. This was fairly unsurprising because in the course of other testing people had been finding spasticity in a lot of other muscles.
So I did several months worth of a weird electronic training routine to learn how to isolate and relax that muscle. With only partial success. So the next step is trying an implant that will send signals to the muscle in question telling it to relax. It’s only minor surgery, and much as I loathe surgery I look forward to this one every time I sit on the toilet until my feet go numb.
It seems like every single time a doctor dismisses what I have to say, a later doctor will find the real cause of the problem with the right testing or exam. In fact, given my fear of doctors, I seem to have a far better track record this way than usual. They don’t always find the first thing that comes to mind, and sometimes they find something while looking for something else. One time they had to do a long methodical series of tests before finally finding something totally unexpected (a rare form of COPD (caused by, hmm, medical neglect) when their best guess had been aspirated reflux). But they always seem to find something, given enough time. Because, despite what the prejudices of some doctors might say, I never bother a doctor over nothing.
You would think this kind of track record would increase the confidence of the ones who blow me off, but there is always someone ready to believe that people who look like me can’t possibly be right if we say something’s wrong. Because apparently there aren’t enough disabled people who die or become seriously ill because of people either dismissing our observations or just dismissing our worth as human beings.