Zugzwang

So, a few days ago I posted this deliberately-upsetting video to YouTube;

 

 

Which quickly got found by a big Dr Blog, cranquis.tumblr.com, ran by an American medic called Dr Cranquis (It’s very good, he’s very funny and obviously a very good doctor too).

 

And this in his response made me jump out of my weird, stretchy skin;

 

“When EDS is taught, the emphasis usually is about the plasticity of the patient’s connective tissue, the genetic transmission, the “double-jointedness”, and the risk for blood vessel ruptures. There’s always at least one old-timey picture of a “circus Plastic Man” stretching his neck skin way out, for some reason. But while the “easy joint dislocations” are mentioned, I don’t recall anyone emphasizing the (obvious, in hindsight) risk this would create for excruciating pain.”

 

Because this exactly reflects the complaint that I keep making; Medical teaching programmes and textbooks, when they go into EDS at all, always emphasise the visually-dramatic. They go for the most obvious even-my-dog-could-tell-you-that’s-luxated luxations, the stretchiest stretchy skin, the most pronounced micrognathia, enlarged orbits, and visible veins and the most extreme weirdly-proportioned habitus. And they take the photographs in such a way that they show up the criteria as much as is possible, foreshortening and back-lighting and putting in perfect profile, whilst twisting the limbs and fingers around into the most extreme examples of the Beighton warp.

 

So doctors learn by seeing the most blatant, and not the most common, cases. They don’t see the tall girl with long fingers who’s always clutching her back in pain but insists that it’s just overtraining. They don’t see the boy with huge blue eyes, whose hips click a bit when he walks but in ten years’ time he’ll be in a wheelchair. They don’t see the rugby player that keeps “popping” their shoulders whenever they stand up from the scrum, that lives in a constant cloud of Deep Heat and freeze-spray. They definitely don’t see the forty-year-old with visceroptosis and a uterine prolapse, but otherwise no symptoms other than sore hands that they put down to old age. They see the depressed teenager who can’t eat, who claims to feel full after two bites of a pasty, and has a drawerful of laxatives, and they insist that it’s an eating disorder even when he cries over how thin he’s getting. They see the toddler with fist-sized bruises, and they call social services, and refuse to believe that they really do just keep falling over and that the parents are just as worried as the doctor. They see the pain episodes, like the one above, and say that it’s drug-seeking, psychosomatic or exaggerated, because EDS is just that thing that makes you a circus freak, isn’t it?

 

We need some kind of campaign that says that the reason that a lot of people don’t see zebras is because we look and sound basically like stripey horses.

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