I remember lying in a hospital bed the first time I hurt my back badly, in tears, waiting for my MRI slides to come back, and saying to my dad, “But what if they don’t find anything?” I was only 20, but I already understood something fundamental about our system: it is ready, willing, and primed to disbelieve people who say they hurt or feel wrong. It wasn’t like those TV shows where the doctors vowed to get to the bottom of whatever obscure disease or ailment was causing so much pain and hurt; it was “we already hold you under the highest suspicion for daring to be young and in pain, and we’re going to assume you’re full of shit until there is indisputable evidence to the contrary, but we are not going to go out of our way to find that evidence because your insurance will only cover the most basic of tests, so your choices are continue to suffer or shoulder the crippling medical expense of the extra tests yourself.”
When the surgeon came in and gave me his speech about having assumed there was a mix-up in the slides because there was “no way” a back as bad on film as mine belonged to someone my age, I was terrified, sure, but I was also relieved, because ten minutes prior to that, the nurses had brought in a PCA morphine pump. Prior to that, the on-call doctor assigned to my case had refused to give me anything for pain, condemning me (without even seeing me) on the grounds of my youth and my complaint, even though my primary doctor had direct-admitted me for the express purpose of pain control. When they rolled that pump in, the only thing they said was, “We got your MRI slides. They’ve referred you to the surgeon. He’ll be in shortly.”
I didn’t know what was wrong, but I knew something had to be. They’d found something. Which, no, wasn’t good, but it meant 1) I was finally, finally getting pain relief, and 2) they would start taking me seriously and work to figure out what was wrong.
No, I don’t want to have chronic back pain. No, it hasn’t been fun, or exciting, or made me feel “special” to be disabled. Mostly it sucks that I can’t do the things I want to do.
But what sucks worse, and what happens to so many people in chronic pain and illness, is the cause of their pain and illness isn’t immediately obvious, so they’re told they’re imagining it. They’re told it’s all in their heads, because the “tests are normal.” It gets to the point where you start to question your own sanity. You start to disbelieve the signs of your own body. You start to wonder if maybe they’re right, and you ARE just imagining it, even when you’re doubled over in pain, weeping and gasping because it hurts so much and you just want to know why.
So yeah. Fuck this idea of “we want to be sick.” We don’t want to be sick; we are sick and we want to know why and what to do about it.
