My Unreliable Body, Part Two

Photo by Gabriele Negri via Flickr. Used under Creative Commons.
Photo by Gabriele Negri via Flickr. Used under Creative Commons.

This is continued from My Unreliable Body, Part One.

As I mentioned in my previous post, I have been diagnosed with a number of health issues. One doctor told me I have a “bad batch of genes.” Most of my health issues do run in the family, it’s just that one person will have one thing and another person will have another, while I have everything that runs on both sides.

There’s another health issue that I haven’t spoken to a doctor about yet but that I know I have: Joint hypermobility syndrome. I have read the diagnostic criteria the doctors use, and it all fits. I have apparently had it my whole life. My mom says she first noticed this when I was a baby, when my thumb had gotten caught on something and was bent all the way backwards, but I was not showing any signs of distress. She figured I must be double jointed, and that’s what she always told me, so I never thought it was a problem, and I never attributed any of the problems I did have to my flexibility.

I don't usually share personal photos here, but this is a picture of my hand, showing my hypermobile thumb.
I don’t usually share personal photos here, but this is a picture of my hand, taken today, showing my hypermobile thumb.

The thing with my thumbs became my party trick when I got older. I can also bend my legs the wrong way at the knees and I used to be able to comfortably get my feet behind my head. Many times people have come to me in shock asking, “What are you doing with your hands? Doesn’t that hurt?” And I’ll look down and realize my fingers are bent in odd ways, which I hadn’t even noticed because it felt normal and comfortable.

Actually, odd hand positions aside, my flexibility was always the one thing about my body I was proud of, but it’s been causing me more and more problems as I get older, and I’ve only recently learned that joint hypermobility syndrome is even a thing. It figures, the one good thing about my body is just part of another syndrome. Learning about it has made a lot of things make sense though.

Sometimes my right ankle painfully pops out of joint, and my knees click and often feel loose and unstable. Three times in the last ten years I’ve fallen down while walking for absolutely no apparent reason whatsoever. My ankles or knees just give out. I think people assume I am intoxicated when this happens.

Washing dishes is getting difficult, as it’s hard to hold a heavy item without pain or without my hand just kind of giving out and dropping it. I am an avid reader, but I can no longer read hardcover books because I can’t support the weight of them with my hands. I have switched almost entirely to e-books because my e-reader is nice and light.

Interestingly, when reading up on joint hypermobility syndrome, I came across something that mentioned a possible correlation between it and autism. Anecdotally, an online friend of mine who has been diagnosed with Asperger’s also has it.

My loose, unstable joints, along with having the poor muscle tone associated with both this syndrome and my then-untreated hypothyroidism, explains why I couldn’t run as fast as other kids even before I gained weight, and also explains my inability to do the flexed arm hang in P.E. when I was a kid. It had never occurred to any of my teachers that I might have a physical problem that, through no fault of my own, was causing my lack of ability. They just assumed I wasn’t trying.

I now walk on a treadmill for exercise, but I have anxiety that the noise of it bothers the neighbours in our apartment building. I also used to work out with weights, but I don’t have the floor space for it here, and it’s become more difficult because of the issues with my hands.

Despite the fact that I have issues that cause me pain (joint pain, severe menstrual pain, recurring kidney stones, etc.) which is sometimes bad enough that I wish I had something stronger than what I can buy over the counter, I absolutely will not ask a doctor to prescribe pain killers. I am so often misunderstood and I am certain I would be mistaken for a drug-seeker. I buy Tylenol 1 when things get really bad, and that is difficult enough for me, as you have to ask a pharmacist for it and they ask what you use it for and make sure you’re not buying it too often. You’re allowed to buy one bottle a month here, and I buy it about once every six months, but I still feel horribly guilty when they quiz me.

In spite of how it might sound here, I try not to indulge in any self-pity, and I don’t talk about my physical problems much, at least not with anyone other than my husband or parents. I don’t want to get labelled a hypochondriac, and the last thing I want is any extra attention. And since most of my socialization and work experience in my adult life has been in churches, I don’t want to incur the judgment that some church goers (I’m specifying church goers here, not Christians, because church culture is something entirely different from Christianity and I believe that those who truly understand the nature and teachings of Christ are not this hard on people) feel towards people who have chronic health problems: That we lack faith, that we just want attention, that we are too negative, that we are complainers.

And then there’s the issue of unsolicited advice I mentioned in my previous post. Inevitably, if word gets out that I have various health issues, or when people have made their own observations like when they see me frequently ill at work, they start telling me what I must be doing wrong (because if someone’s ill it must be their own fault, right?) and what I should be doing or eating or taking. I’ve had people try to sell me all kinds of snake oil from their pyramid schemes and offer to balance my chakras and whatnot. (For what it’s worth, I did let the woman “balance my chakras,” and it made me feel exactly 0% better.)

Even saying something as simple as, “I don’t feel well today,” to the person who shall remain nameless led to this person snapping back at me, “Don’t say that! Words have power! You’ll bring it on yourself!” I don’t agree with that type of theology or whatever it is, but arguing with people just stresses me out and makes me sicker.

So, it’s just not worth it to talk about it, even if part of me thinks it might help people to understand why I live the way I do. Many people do not respond with understanding, so what’s the point?

If someone invites me somewhere and I’m having a bad day, pain- or fatigue- wise, depending on who it is, I’d probably rather say, “I’m sorry, I don’t want to,” than, “I’m sorry, I’m in pain today.” They might think I’m being difficult, but at least they won’t think I’m a complainer who lacks faith and wallows in negativity.


4 thoughts on “My Unreliable Body, Part Two

  1. I hate when people try to say that others bring pain and illness upon themselves. Who would want to be sick or in pain all the time? I guess some people cannot understand unless they live through it.
    My joints are weird but I don’t know if I have any actual problem with them… I can snap my knees and ankles too, but my legs are really stiff and I have never been able to touch my toes, even as a little kid. Remember the “sit and reach” test in gym class? I always failed that! I also could never do arm pull-ups or run very fast. But maybe I am just a weakling!

    Liked by 1 person

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