I keep going through cycles where I try to convince myself that there's nothing wrong with me, I'm just a lazy sod, and I'm whining over nothing. Symptoms are subjective. Nobody likes getting up early in the morning, they do it anyway. Nobody likes hot muggy weather, but they don't let themselves melt into a useless puddle on the bed all afternoon. Then shit happens, and I am reminded that not only are all the things I think are wrong with me actually wrong with me, I am usually introduced to a brand-new symptom that I didn't even fucking know was a thing. The tech who did my hip imaging mentioned in passing that low body temperature was a known feature of EDS. Judging from the comments I got when the nurse couldn't get an IV into me last week, and the fact that she tried to fix that by heaping me with heated blankets, I don't just think my hands and feet are always cold, or feel chilled when I'm short on sleep, I actually am having temperature regulation issues.

I have kind of given up on asking people to diagnose me officially and just started telling medical people I have Ehlers-Danlos. If they ask where I got the diagnosis, I say 'me'. It hasn't started an outright argument yet, but I'm waiting.

A word on medical self-diagnosis: Don't.

If you want a few more words on it, don't bother unless you've already exhausted all the reasonable options, are willing (and able) to essentially put yourself through med school lite via getting your university-affiliated friends to steal things off PubMed for you, and are willing to concede the argument to your actual doctor if in fact you turn out to be wrong. Because you will turn out to be wrong a lot, and while your doctor might not actually know what you have, s/he probably has a better idea of what will outright kill you than some random yobbo who put a FAQ up on Squarespace and called it a day.

This is also one of those things where I'm going to go 'do as I say, not as I do'. I've gotten away with a lot of incredibly dumbass things in my life. The fact that I'm here to tell you about them is just survivor bias. If any one of them hadn't worked out, you wouldn't be hearing the story.

There's a phrase in medicine: "When you hear hoofbeats, think horses, not zebras". There are horses all over the world, but zebras only live in one chunk of Africa. If you hear something clopping up to your boring suburban practice, the odds that it's anything but your average everyday horse are extremely low. The odds of it being a zebra, however, are not zero. They do exist somewhere. Ehlers-Danlos patients have adopted "zebra" as a sort of collective nickname. The best research I can find gives a rate of 0.02-0.04%, although that's probably way low -- the severity of symptoms varies from person to person, and it's possible to just not have any idea there's a reason why your elbows pop backwards. So far all of the other medically bendy people I've run into weren't diagnosed until well into adulthood, simply because nobody thought to ask.

There's no good lab test for hypermobility type, which is the one I have. They can test for genetic markers, but unlike some of the other varieties, HT is not associated with any one specific mutation, so it's kind of worthless. I am quite sure I have it anyway. It is the only potential diagnosis I've ever run into that I can explain without having to involve the phrase, "but I'm weird."

Take anxiety, for example. The definition of an anxiety disorder is "huge amounts of anxiety that may or may not have any relation to reality or logic, but are nevertheless ruining your life," so I definitely have that. It's listed on my records as "anxiety disorder NOS" i.e., 'not otherwise specified', because it doesn't really fit any of the standard listings. Most anxiety is at least partly psychogenic -- you talk yourself into having panic attacks, or at least have a hard time asserting enough logic to talk yourself out of them. There's an emotional element of sheer terror. People who have panic attacks have been known to mistake them for heart attacks or strokes and hie themselves to the ER, more than once. They're not stupid, and they don't think the doctor's incompetent; it's just that when you're in the middle of it, the fear convinces you that, yeah, the first three turned out not to be pulmonary embolism after all, but what if this is the one you can't ignore? 

I always weirded out the psych personnel, because I don't do that. I always know what it is, I know that I'm not dying, and I know what they can give me to fix it. My stress levels are obviously high at that point, but it's always over some kind of life events that are legitimately stressful. 'Talking myself out of it' doesn't work because there's nothing to argue with myself about: I know I'm not in mortal danger, it just doesn't make any difference. When something startles me, first I hit the ceiling. Then, a few milliseconds later when it's time to file the Incident Report, my brain scrawls some completely random shit on the form, jams it in the outbox, and congratulates itself on a job well done. It immediately gets bunged through the reality tester, where it fails harder than an absentee stoner in a DiffEq course ("Mr Amygdala, you cannot throw the entire system into panic mode every time the Weather Service flies a Cessna overhead, on the grounds that it -- and I quote -- 'might be carrying a nuclear payload.' Unquote."), but it doesn't matter. The fight-or-flight thing is off and running. And I can't withdraw to calm down, because by that point, I am startled by almost literally everything in the entire universe, and there just isn't enough time between the air molecules giving me jump scares.

Ehlers-Danlos is the only diagnosis I have ever found that would make all of the bizarre things I run into on a daily basis completely normal. It doesn't just explain all the crazy seemingly-unrelated shit that goes wrong, it also explains a lot of the crazy seemingly-unrelated shit that goes right. I span several Fächer in singing -- I'm not record-breaking or anything, but if I'm in regular practice, I can sing most of "Phantom of the Opera" by myself, less the Phantom's bottom note, and Christine's top 1-2 whistle voice shrieks. EDS is a collection of mutations affecting collagen production, and I bet you can guess what vocal cords are made of. The ability to hit the specific note I'm aiming for is a matter of practice, but I have extra singing range in my voice for the same reason I have extra rotational range in my hip joints.


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