You would think I would know by now, that failing to mention something because I don’t know what it is would be a bad idea. I just know that if something doesn’t fit into tidy categories that other people create — especially anything deemed medical — then it’s often best not to talk about it at all, because the reactions I get from the medical profession can be negative when they’re puzzled.
When I was on CNN, they showed me going to the dentist. The dentist had done a cursory check of my jaw and said it was just fine, and that any problems with it were probably not mechanical and that it was probably just a coincidence that they got super-bad right after a five-hour dental procedure under general anesthesia. But that I should see a specialist “just in case”.
I just went to the place I was referred to — the doctor who actually deals with jaws on a regular basis. He immediately felt and heard everything that’s actually wrong with my jaws (at least the stuff that can be felt and heard), and ordered more tests. He seemed aware it’s bad in there. He also asked me about other joints, and I talked about my wrist tendonitis.
And then I talked about something I hadn’t filled out on his questionnaire. I was afraid to fill it out on the questionnaire because it’s been my experience that unexplained pain leads to doctors wondering if the pain’s there at all. But he’d seemed nice, so I took a chance and mentioned it: I get joint pain all over my body sometimes, but don’t appear to have arthritis or any other thing I know that leads to joint pain.
He did something odd (to me) then.
He asked me to start bending various joints in various odd ways (such as the one pictured). I did so. He watched and said, matter-of-factly, “You’re hypermobile.” He showed me how he could not bend his joints to the extent I could.
Then he said this is quite possibly the cause of the joint pain I’ve been experiencing, and there’s even a possibility it’s tied into why my jaw went bad so easily.
The amazing thing to me is that I’ve had this joint pain for ages but ever since it was shown I didn’t have arthritis (at least not in some parts of me), I haven’t wanted to say that I had general joint pain. I have had a lot of experience of medical professionals who tell me that what I’m experiencing inside my body is wrong, even if I can feel it. I was afraid that the joint pain was one of those things that didn’t fit into a category.
I used to fit myself into categories — out of fear — by saying things that I thought were expected of me. Now I don’t do that, but I just fail to say things that I think might be too unexpected for them to handle. This has its obvious problems, but so does saying everything that is happening in my body in front of someone who will either look at the fact that they don’t know what it could be, or the sheer number of things going on, and dismiss everything I’m saying. That’s happened so often that it’s bizarre and pleasant when someone happens to come up with a plausible explanation for something I’d been hiding for fear of confusing people.
But you’d think I’d know by now that this is not the best way of handling things. That of course, if something is happening, then it’s happening, I’m not imagining it. I might not know what it is, but it’s something. It weirds me out that doctors default to “It can’t be happening” so much that people like me become too afraid to mention out-of-place things. Even highly painful out-of-place things.
The other weird thing is that there was a discussion of hypermobility on an autism-related mailing list I was on last year or the year before, and I was utterly convinced at that point that I wasn’t hypermobile, that my mother probably was but I wasn’t. But the criteria fit me and then some (I’m overqualified in fact) and it does sound pretty plausible. I’m just always weirded out when a doctor does something simple and goes “Oh, it’s this,” with something I’ve been afraid to talk about for ages.