This year I finally figured out what the fuck was wrong with me, medically speaking. It's a mixed blessing. On the one hand, it's nice to know I'm not lying when I inform people that no, I really can't do something. It's difficult not to question that when for most of your life, the response to it was 'kwitcherbitchin and do the thing I told you to do', and then getting shouted at again when you collapse.

It also solves a bunch of minor but enduring mysteries, like why no one in the family has ever looked their real age. Skin develops creases over time for the same reason paper does: Bend it in one spot often enough and it breaks some of the supporting fibers, creating a weak spot where folds happen more easily in the future. As paper is supported by cellulose, skin is supported by collagen, the same stuff that forms the bridge of your nose and the caps on the ends of your long bones. Ehlers-Danlos patients produce a form of collagen that's softer and more pliable than normal. It's lousy for holding your joints in place, but also more tolerant of repeated deformation. Unless you are a professional circus freak whose day job is stretching your bottom lip over the top of your head, quotidian movements are less likely to damage collagen fibers in your skin. Hence, wrinkles come in a lot more slowly.

On the other hand, it means that pretty much all the weirdness is structural. Not only is it unfixable, a lot of it is likely to get worse over time. I'm not as badly off joint-wise as some other EDS patients I know; one of my friends had had the same shoulder surgically reset like three times now in an effort to keep it properly socketed. I also have a ton of the associated autonomic weirdnesses, and those can fuck up life something awful. I can ignore the smaller annoyances, like my hands and feet being constantly cold, and I can treat a lot of the moderate ones, like knocking back a bunch of Aleve when my knees or vertebrae have for some reason decided they've had enough of moving for the day.

There are a couple that cause me significant problems. If you have ever been in a situation where someone willingly hands you a bottle of opioid painkillers, you can imagine that having them not work is No Fun At All. My chronic state of underemployment has nothing to do with being unqualified or unwilling to work, but mainly with the fact that most prestige careers require you to get up early and turn up to an office at the same time as everyone else in the area, which I have learned the hard way that I cannot do. I'm sure the ER staff are very nice people, but I do not want to visit them on a regular basis. My long-term career options appear to be "waitstaff" or "creative freelancer," which is basically the same thing as "waitstaff," only you get to dress weirder and maintain a curated collection of rejection letters.

On the gripping appendage, I now have a small book of published research papers that I can hand people who burble up with patronizing doubts, and I am fed up enough with all of this that I will simply fire any physician who doesn't listen to me. I've had a pdoc throw me back at general practice because she says it's not a psychiatric problem, which is great, because otherwise once you've been sent to Psych Services the first time, no one else will talk to you. Must keep the headcases in their proper place, you know.

So here's to 2015, where I discovered that if you have enough friend with university journal access, you can eventually get somebody to steal articles from JAMA and NEJM for you.


  1. I can very much relate.

    I ended up paying a psychiatrist to write me a "He is weird but the following list of symptoms are neither psychosomatic nor otherwise the result of psychological problems" letter because every specialist with fob me off with a circuit through their service's shrink (wasting 6 months to a year) before admitting they had no idea what was wrong with me.

    Having a diagnosis intersect your experiences means you can use information about the condition to make educated guesses about what is happening and explain it to the monkeys around you instead of relying on pure experiential knowledge and dealing with their incredulity that anyone could learn from mere repeated experiences.


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