1:55am March 29, 2015

114907699582

So I had a doctors appointment with my PCP and it was going REALLY WELL EXCEPT my PCP is a resident and has to consult another doctor who I have never really met and after coming back

“I will give you meds right now and help find you a pain/rehab place”

turned to:

“we will refer you to the place…

CW for brief talk of suicide in the context of prevention-by-dissociation.

That really sucks. I wish the medical establishment would spend even a tenth the energy it does hurting people, on helping people. It would make a huge difference.

I don’t know why, but my pain clinic has never been anything but good to me. They haven’t had all the answers, but they’ve never denied me treatment. In fact, they put my name on a list of names they read to the legislature one year, in an attempt to shame Medicaid and Medicare for not covering radio frequency ablation (a kind of nerve block that for me, works far better than the steroid version, and lasts far longer so fewer pokes and less pain in a year).

The reason I don’t know why is because I know other pain patients (including several autistic ones, since I go to a lot of mixed ID/autistic programs) who go to the same clinic. One of them went to their pain therapist armed with studies about differences in how autistic and nonautistic people react outwardly to different types of pain. In about ten seconds, the therapist pooh-poohed the whole thing. Why? “There’s no such thing as an autistic adult, don’t all autistic people die in childhood?” I’m not trying to be funny, they actually said this to the face of an autistic adult.

I have refused therapy for pain and they have not given me any flack for it. I told them that growing up with neuropathy and neuralgia means that, if I only had the words for how I do it, I could teach just about any pain therapist a thing or two about controlling pain and its emotional results using the mind. Dissociation is not always a bad thing when you’re in excruciating pain for instance. It can prevent suicide. I’ve done it both voluntarily and involuntarily.

It’s arrogant of some of these doctors and therapists to think they know more than we do about the emotional and psychological effects of pain and how to handle it. I mean, there are people who do get a lot out of therapy for pain. But they are not usually people who have been relentlessly hunted down by pain from the cradle. They are not usually people whose first experience of our bodies is pain, so much pain that when we try to get into our bodies, the pain drives us right out again into dissociation-land. So much pain that a huge chunk of our energy goes into fighting it so we can function all day, not knowing that everyone else isn’t fighting pain that never goes below a 6 on the 1-10 pain scale (personality changes? what personality changes? I was born like this, there was no change). It means going through developmental phases where the pain gets better, and others where it gets worse, often abruptly, as if overnight – but the pain never truly goes away.

Until a pain therapist tells me that they have had that experience, I’m not going to trust that they know better how to handle the psychological and emotional elements of pain control than I do. I’m 34 years old and I can’t remember an hour without pain. Sometimes my pain dips below a 6 now that I’m in treatment, but that’s the most I get.

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