12:26am July 24, 2014

“We are used to ignoring our own bodies. “These carrots are too spicy” we complained as a child, only to be told no, they were sweet, that the music wasn’t too loud, nobody can hear lights, what you are experiencing is invalid. We heard: you are invalid. You do not experience the world the same way as everyone else, and therefore, your experience is wrong. You learn to ignore the ever-present pain because nothing can be done about it, but then you have a kidney infection and others get mad at you for not noticing sooner. But why should you trust your body when it is always wrong?”

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Scarred by Kate at Thinking Autism (via disabilityhistory)

Oh so true.

(via soilrockslove)

I was always told “that didn’t hurt” if I said “ow”.

So I stopped saying “ow”.

I lived with severe chronic pain, never getting below a 6, from the time I can remember existing. Like some of my first memories are that when I tried to connect to my body closely, I’d get blasted with pain, and I’d dissociate to get away from it. It was some kind of neuropathy or central pain, we don’t know which. I didn’t communicate about it until I was 15, at which point I was told it must be seizure activity because Neurontin made it better. Then several different meds later, I told that story to a doctor at the age of 22 or so when the pain had got so bad I was bedridden for a month (had to personally retrain myself to sit up for long periods), and she said that sounded like neuropathy and prescribed Neurontin on the spot, even though I’d been careful not to name Neurontin during my description, I just said “an epilepsy medication”.

So 22 years of searing, horrible pain that “didn’t exist”. Didn’t start writing about the pain until I was maybe 18 and found that lithium made it somewhat better. But I’m glad I got off lithium because that shit is dangerous. Anyway, when I got on Neurontin, I had to revise my entire pain scale. What I had called a “1” before was now a “6”. That’s how bad the pain was. And I had to revise my ability to detect overload, because it had always been associated with the pain becoming more severe, and with the pain treated, that was much more subtle if it happened at all.

Now I’m on Lyrica and Trileptal instead of Neurontin but they still treat it well. I tried to reduce my Trileptal recently and ended up in complete agony pain-wise.

Anyway, it makes me angry that an autistic child can grow up in this kind of pain, in this level of pain, with nobody noticing, and everyone saying “that didn’t hurt” all the time. With neuropathic pain, everything hurts – your clothes hurt, being brushed against hurts, the air on your skin hurts, all the things I was told “didn’t hurt”, hurt like hell, and go on hurting a long time after the initial touch is over. I remember having these “afterimages” on my body, like someone would brush past my arm and for an hour my arm would burn in that location. But “that didn’t hurt”.

And this is also behind several near-death situations where I didn’t communicate about pain for any number of reasons but one was who would even believe me. Or I did communicate about pain but lacked the correct body language so was written off until I hit the point of organ failure. Or things like that. And then they wonder at the fact that when they give me trigeminal nerve blocks, I’m the one patient who doesn’t squirm or grimace or cry out during the procedure.

And then there’s the whole “They don’t feel pain like we do” thing to contend with.