i dream of being possible

desperately seeking diagnosis

I reblogged two posts recently on tumblr that were – broadly speaking – about chronic disability and the medical establishment. The first one was about the feeling of anticipation you get in waiting to hear test results… not a feeling that you’re hoping everything is ‘ok’ but the feeling that you are hoping that you have something identifiable. Something nameable. The second was about how awful doctors and such make you feel when you’re looking for answers and the relief that comes with knowing that you have a Real Condition – but also the hopeless, impotent rage of dealing with people who tell you to loose weight, to stop transitioning, that maybe its bc you’re a woman, etc and so on.

For me, that special feeling of anticipation in hoping (fearing) that the test results will finally cough up some kind of Explanation for why you feel like garbage all the time…. I’ve been embarrassed and ashamed of having this feeling. Like when I thought I might have narcolepsy and was waiting for my sleep study results…. It wasn’t that I hoped/wished for an incurable neurological disorder, but rather that I just wanted some real explanation for why I was tired all the time and randomly, usually uncontrollably fall asleep all the fucking time. While I didn’t end up having narcolepsy, I did get an answer.

But I don’t always get answers. And its incredibly hard to deal with this sort of thing because all you know is that something is Not Right. But you don’t know what that is. Fuck, sometimes you don’t even know if the Not Right is actually normal and something everyone experiences (this is literally what I thought for years about a lot of the things I now have an Official Diagnosis(tm) for).

Of course, everyone worries. I mean. That’s just life, right? Oh. You mean that its not normal to worry about things so much that it occupies a great deal of your time and energy and has a serious impact on your quality of life? That’s what ‘anxiety’ is? Oh. That feeling you periodically get on transit that you’re trapped, going to die, and need to immediately shit is just regular bathroom stuff, right? Especially since you always actually need to use the washroom. Oh. You mean that this is actually a panic attack? Huh. Weird.

And the list goes on.

None of which is helped when you talk to doctors who’re like, “well, maybe you just need to loose weight?” when it actually turns out that recent medical literature has shown there to be no relationship between weight and severity of sleep apnea. But that’s your ‘treatment’ plan. Loose weight. That’s it. Because you can’t afford the piece of medical equipment that literally every doctor who hears that you have sleep apnea will ask you if you have one. But they same doctors who’ll look at your test results and, yeah, see some aspects that are a little out of place for the diagnosis they gave you, but hand-wave it away because you already have a diagnosis.

Doctors are so… dismissive. And as noted in the Golden Girls clip I saw earlier, you always wonder if they ever actually see doctors themselves. And if they do, why is it that they have so little compassion and empathy for their patients?

Like. They really can and do make you feel crazy. Or like you’re stupid. Or like you’re imposing when you become insistent.

And a lot of this is growing up with the notion that doctors are these wonderful people who help sick people. That they Know what they are talking about. We give them a level of authority that isn’t shared by many other professions. Worse yet: doctors are actually this important. They decide when or if you get care. They make decisions that kill or save people. They can be the one thing standing between you and a better quality of life.

The problem being is that few of them appear to actually be the altruistic healers pop culture tells us they are. We have tv shows filled with doctors who care and work really hard for their patients. And when they are dismissive or whatever, it becomes and Important Life Lesson for them. A teachable moment. But it jars the mind to realize that even fictional doctors need to be periodically reminded that patients are human. But not just human, but humans who’re sick, suffering, and who need help.

Unfortunately for most of us, real life doctors apparently never actually get these teachable moments.

And this is why literally every chronically ill person I know has story after story about horrible doctors and how truly dehumanizing dealing with the medical establishment is.