At the moment, I’m looking at my keyboard and wondering if I should take it with me to my orthopedist appointment next week. I figure, when we get around to discussing the RSI part of my disability, that if I’m going to tell them I’ve been trying to type a little, I should probably show them what I’ve been typing on so they don’t get the wrong idea. This seems like a logical idea to me, particularly because a one-handed ergonomic keyboard doesn’t seem to have made it onto doctors’ radars. Neither, actually, has investigation into the incidence of RSI in one-handed people compared to the vast literature on two-handed people.
However, my confidence in this idea has been usurped by more familiar feelings of nausea and unease. Thanks to my jackass of a former orthopedist, I have to evaluate any of my own actions, questions, or opinions as a potential risk. He made sure of that, because any doctor or SSI official reading my records will see his version of our last visit.
Put simply, he told me there was nothing wrong and I should use my hand as I normally would. That didn’t feel right, because I sure felt something, even on good days. [I found out later that in addition to the RSI and hypermobility, I had ligament sprains.] Sometimes it was pain; others it was the inability to make a fist reliably. I asked him, then, whether the symptoms wouldn’t just come back that much faster. I can’t convey the tone of our exchange, but I know I was stammering and losing eye contact from confusion. I couldn’t understand why he didn’t at least refer me to someone who had the means to be more thorough — I was thinking, “Now what? Do I see a specialist, a neurologist, or what, here?” But I never got a chance to ask him that, because in the space of me lowering my eyes away from him and waiting a second for the words, he spoke in the way that you speak to a bratty child asking “Are we there yet?” One third incredulous, one third amused, and one third exasperated, he said, “[Hand2Mouth], that’s it! I’m done. What more do you want?” When I opened my mouth to ask about the referral, he threw up his hands, shook his head, left the room and closed the door.
Naturally, I requested my records in preparation for finding a 2nd opinion. Tellingly, my x-rays were not included. When I read the doctor’s notes, I found that he’d essentially covered his ass, saying that he’d found nothing out of the ordinary and portraying me as a hypochondriac, accusing me of being uninterested in recovery through physical therapy because I was stubborn. Hey, Doc, there’s a big difference between “normal use” and learning how to use my only hand in such a way that I don’t rupture anything. You said nothing about the latter. He also said he’d never left the room when I was asking a question. Split hairs much — he left the room as I was taking the breath between words to ask the question.
My 2nd opinion went much better, and the assistant dictated his notes in front of me. I don’t know if that was common practice or whether he just thought I was a troublemaker it’d be safer to appease, but I liked it. I also had concrete diagnoses, and was given a couple of tools to help. I’ve gotten better in the year since, though I do still have problems. Even so, the new doctor obviously knows what he’s doing. So I don’t know why I’m still afraid.
It’s true that I’ve often had to figure things out myself. I didn’t have an IEP or get accommodations when I was growing up, and I researched and gradually acquired my assistive technology myself because I wasn’t aware there were programs to help me. I even bought my own splint and glove instead of using what the new doctor gave me — I wasn’t able to fasten the doctor-issued ones myself. But that doesn’t mean I think I can do everything. I’m afraid that any assertiveness on my part is going to be taken as noncompliance, and thus I won’t be taken seriously. I know this fear will pass, but all the same it’s entirely unpleasant while it lasts.
We have that right though — to refuse treatment we don’t think is working, to advocate for ourselves, to choose what we think will work. If you have to ask questions to get it, so be it.