You’d think I’d know, by now.

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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.

picture of me bending my thumb backwards

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.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

25 responses »

  1. Tut tut to you, for not coming clean with the doctor – there again, having a doctor you can trust is the first step. More tut tutting for trying to fit yourself into a category, any category. We shun the little boxes! Glad it’s not arthritis. Cheers

  2. Well, it’s not exactly me I’m trying to fit in the box. I’m usually just trying to make it look enough like I fit in a box not to get yelled at or worse. :-P Not that that’s any better in the result, but there’s a difference.

  3. I am really glad that you posted this. Our son is also hypermobile & his pediatrician was so concerned about it that she had him evaluated by a hand surgeon a couple years ago to make sure his hands were strong enough for him to safely participate in some activities (like phys ed). They are, which is good to know, but it never occurred to me that the hypermobility might give him trouble as an adult. It’s good to know about your experience & to keep it in mind for the future. I am also glad that you found a specialist that you can trust. I have had similar experiences with clueless members of the medical establishment & it’s a terrible head game…

  4. There are useful kinds of categories — there’s a difference between putting someone (or yourself) into a self-limiting ideological constraint, and using a particular piece or set of information in the kind of pattern-matching that allows you to understand and better your life more thoroughly. Like, it’s not good to insist or assume that females are going to adhere to traditional feminine stereotypes, but it IS good to know that you’re female so that it will make sense when you start growing breasts and menstruating.

    Often times, the problem with categories isn’t that categories themselves exist, but rather, that people either get shoved into the wrong category, or have real facts about their life ignored simply because those facts don’t seem to fit any of the available larger categories known to the local population.

  5. How could you NOT have told me about this??? You KNOW how I perseverate on connective tissue disorders and hypermobility and skin stretchiness and…. do you have flat feet? :-) Come clean. (well you can tell me if you want to, and off the blog… not that it’s any of my business, but I’d like to put you in the right category – autistic with connective tissue issues). People with EDS sometimes need finger splints to keep their fingers from being in pain. I don’t know how they interfere with typing.

  6. Heh. Hypermobility is FUuuuuuun…

    I’ve got Ehlers Danlos type 2 (specific hypermobility syndrome) & the places I’m most obviously hypermobile-hips, shoulders, elbows, ankles, back, I’m 9 for 9 on the scake-cause the least trouble. It’s the ankles (which no one looks at), wrists, and jaw as you’ve experienced.

    The MOST obnoxious parts are not being believed like you’ve experienced, the bruising (right now I look like an abused girlfriend or something), spontaneous dislocations, and every damn doctor demanding that I prove it. guh.

    Good luck, maybe some physical therapy or properly fitted braces will help…or even the cheapo braces help sometimes…

  7. It was good to hear about this. Shouldn’t be such cause for excitement when a doctor does something useful, should it!?

    ps: also it was great to finally meet you. Another thing that shouldn’t be a surprise, but kinda is: to be relatively comfortable with ppl the first time meeting face to face and pretty much be able to be oneself.

  8. For what it’s worth, this situation of a doctor denying the existence of a patient’s symptoms happens with non-autistic people too. It happened to me with a psychiatrist who argued with me when I told him about the effects of an antidepressant he’d put me on. I think that in general, there is such a clear power dynamic in the doctor/patient relationship that it’s all too easy for the doctor to start assuming that the patient is just a little child lost in the woods. That said, I’ve seen plenty of good doctors.

  9. I was diagnosed with Ehlers-Danlos a couple of years ago *only* because we knew someone who had it and they started pointing out how similar we were regarding physical atypicalities. I’d had unexplained joint pain for quite a while, but didn’t talk about it – at first because I wasn’t sure what I was experiencing, and then for fear of being dismissed (I was getting a lot of that from doctors at the time). Because, of course, it wasn’t easily tested for and didn’t fit easily into a category.

    I turned out to score a 9/9 on the scale, plus stretchy skin, which surprised me. I had always been vaguely aware of having lax joints and loose, fragile skin, but never realised exactly how much. Or even really that it extended beyond my hands.

  10. My daughter who is 28 is hyperflexible. She has pain in her back, shoulder and joints. The doctor has made her stop Yoga classes, because “she is too flexible and does damage to her back”. It is funny beacuse she had gone to various physio-people over the years about the pain, and they all thought it was so wonderful that she could bend beyond where most people can. Now we know it may not be such a good thing.

  11. I have kinda the opposite problem — ever since I injured my right foot some years ago, my right ankle has just never regained its full range of motion. I can walk on it, even briskly, but can no longer run or jump because it won’t stretch far enough to allow for that. And if I’m having a “bad foot day” (when it is stiffer than usual) then I may also have trouble navigating down steps, again because it won’t stretch far enough.

    Wanna lend me a trace of joint flexibility for my right foot? ;-)

    Or, oh, darn, doesn’t it work like that? ;-)

  12. Yeah my occupational therapist had said how great it was that I could bend a certain way, as I remember. And… yeah not a good thing.

    I was not considered flexible in school because their lone test of flexibility depends on arm length as much as anything. My arms are proportionally short (my armspan is 4 or 5 inches shorter than my height) so that wasn’t a good measure of flexibility.

  13. Another one here whose doctors all go “oh, wow, that’s great flexibility”. Actually, the best was when I was still going to a teaching hospital. I’d go in for my annual orthopedic visit, and the students would come in and do the flexion checks, and all ooh and ah over how wonderful it was. Then my doc (great guy) would come in and berate them for not realizing that the flexibility was a symptom, and the cause of most of my problems … hehe.

  14. For years I have hesitated mentioning things to doctors because they’d look at me like I was crazy. I have dislocated bones in my foot, popped my shoulder or jaw having nightmares and my hips during exercise and the doctors would just shake their heads. I had never heard of variations of hypermobility until recently. I cannot bend my joints out ofline, but my ligaments can suddenly just stretch whgen I’m moving and voila something is where it shouldn’t be. The ortho dude calls it “stupid ligaments” and that is detailed enough for me.

  15. 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.

    Yeah, this is starting to sound familiar– we have a lot of things we don’t mention to doctors because they just aren’t relevant, and past experience suggests that bringing them up will result in the doctors trying to make it relevant even when it isn’t– overquestioning, etc, sometimes in ways that go beyond the unnecessary into the overly personal. (“That happens to you? Really? What does it feel like? What do you do about it when that happens?”)

    And when people start in with the crap about “that shouldn’t be happening,” that tends to just make us afraid to ever mention it to anyone at all in the future. It’s like… I dunno, like you just turned into a divide by 0 error in the universe, or some H.P. Lovecraft monster or something, and instead of trying to help you with something if it’s wrong, they just stare and comment on how it shouldn’t be. When we talked about having lower back and hip pain, a few years ago (we don’t have this as badly any more, but it was constant a few years back), people would say things like “A person your age shouldn’t have that.” Well– shouldn’t or not, we were there, and we did have it, so why not acknowledge that instead of cross-checking it against some big list of preconceived “shoulds” like it’s somehow morally wrong for it to be happening.

    Not that it’s just medical things that this happens with– some days we feel like we’re just this big walking compendium of things that are found “too unexpected” or “too weird” for a lot of people, and all our interactions have to consist of us deciding which bits need to be mentioned, which bits theoretically could be mentioned, and which bits shouldn’t be mentioned at all, with any given person. (And just hope they don’t ever happen to pick up on any of the “shouldn’t mention it at all” things.)

    I was not considered flexible in school because their lone test of flexibility depends on arm length as much as anything

    Yeah, we always got chewed out by the phys ed teachers at school for being “not flexible enough” because we couldn’t do toe-touches or most of their stretching exercises. But then on the flipside, out of class, we’d get other students telling us how it was “so gross” how far we could bend our thumbs and knees backwards. (Our knees tend to bend backwards and lock when we’re standing. A lot of the time, unless we’re supported by something, we can’t actually stand up for more than a few minutes without our legs giving way and/or getting dizzy and lightheaded from something to do with blood flow from the locked knees, I guess.)

  16. I think the best thing that could happen for some doctors is for them to realise they don’t know everything and to pay attention when they are told by their patients what is troubling said patients.

  17. Well– shouldn’t or not, we were there, and we did have it, so why not acknowledge that instead of cross-checking it against some big list of preconceived “shoulds” like it’s somehow morally wrong for it to be happening.

    Yeah. That’s exactly what confuses me. “That shouldn’t happen” isn’t useful when something is happening. I actually have heard the same sort of thing from tech support people at times.

    My dad always said I’d make a good technician (he was an electronics technician/engineer before he retired), and I suspect that’s part of it: If something is happening, it’s happening.

    Not that it’s just medical things that this happens with– some days we feel like we’re just this big walking compendium of things that are found “too unexpected” or “too weird” for a lot of people, and all our interactions have to consist of us deciding which bits need to be mentioned, which bits theoretically could be mentioned, and which bits shouldn’t be mentioned at all, with any given person. (And just hope they don’t ever happen to pick up on any of the “shouldn’t mention it at all” things.)

    I also juggle something very similar. And of course deal with the fallout when I don’t mention something someone assumes I should’ve mentioned. (Not sure it occurs to most people that I want to just live my daily life without explaining the backstory to everyone and their dog, and that if they imagine different backstory that’s not really my problem.)

  18. Surprise surprise, Laurentius is hypermobile too, he can do that and other wierd stuff, however I think he pays the price in trapped nerves, if it is trapped nerves and not something more sinister.

    All I can say is that I used to think hypermobility was a good thing with no negative payoffs, but now I am older I am not so sure that it does not lead to decreased mobility and problems as one gets older.

  19. Yeah, me too. Not the elbows though (maybe the knees – hard to tell visually, not formally assessed). But everything else I do. I likely have some sort of connective tissue dysplasia, what with the low vision and the scoliosis and hypermobility and some overlapping teeth etc. Though I don’t think I have Marfan Syndrome due to short fingers (even though they are flexible enough to span an octave) and my arms seem to not be too long (though my pinky finger and thumb just barely overlap over my wrist, same with the index finger and thumb).

    Lately I have even had a ton of pain from my low back, though only sitting or standing, gets better lying down. Tingly in my legs, too. But MRI shows no pinched nerves or disc herniation, just “some abnormalities” that the doctor doesn’t think are likely causing my problems, but they’re going to talk to me about it in person anyway…I am nervous. I really hope they figure out what it is and what can be done about it; back pain is notoriously difficult to resolve short of surgery or long-term use of painkillers, and just two and a half weeks of a moderate dose of naproxen wrecked my gastrointestinal system (though I’m sure that a previous course of high dose ibuprofen in the fall didn’t help matters and laid the major groundwork for that damage)!

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