The mystery of "Himmmm"

About a week ago, I went to an open class/open call where they were offering the dancers a free health screening. Sure, why not. The PTs there were super nice and actually knew their stuff -- that group also works with the local circus performers, so they're pretty used to people doing weird shit with their bodies. They had me do a cardio test, a bunch of range of motion stuff, some muscle strength, etc. It told me nothing I didn't already know. I'm extensively hypermobile, mechanically wonky because of it, intolerant of heat and sudden exertion, and all the systems that are supposed to be regulating my heart rate and blood pressure are asleep on the job.

Believe it or not, nobody has ever bothered to run most of those tests on me. By the time I figured out my panoply of issues had a single cause, I was an adult, living in Massachusetts, and my medical care all went through MassHealth. State health care doesn't run expensive tests for funsies, and I got a solid clinical diagnosis of Ehlers-Danlos just from walking in with a folder full of family history and research papers and bending my fingers backwards for some curious doctors, so it wasn't necessary. There's no real utility to putting numbers on just how fucked I am, either. EDS is a genetic disorder. There isn't any way to fix the fundamental cause of all the cascading problems, so standard of care is basically playing whack-a-mole with the symptoms. You're not treating the patient back to an objective standard, you're trying a bunch of things until you either run out of things to try, or the patient says, "Eh, good enough." The symptoms I self-report are not unreasonable for my diagnosis, and I'm not unreasonable about what counts as fixing it, so there's no point in trapping someone in an office with me for twenty very boring minutes while I run on a treadmill.

I left feeling very, very angry.

Not at the PTs; as mentioned, they were great. And I'm not pissed at my body for glitching out either. I've been like this for forty-one consecutive years at this point, and it is what it is. I'd like to think I've gotten the hang of dealing with it by now. 

I left angry because I remember being a child, and telling people about all of the things that were wrong with me, and not one single adult in my life bothered to take me seriously. The nice ones gave me a lot of pep talks about having confidence and venturing outside my comfort zone. The shitty ones told me to stop whining and do as they said. None of them went, 'hey, so, this kid keeps complaining about this one thing, it seems kind of weird and worrying, maybe go to the doctor and have it checked out?'

My mother does not like doctors. She doesn't like authority figures generally, but doctors for some reason strike her as especially useless. I don't remember very many medical appointments as a kid. Most of the ones I recall were for ear infections, and I strongly suspect we would not have gone in for those if she'd been able to figure out how to get her hands on amoxicillin on her own. My mother has a half-finished nursing degree (that she didn't want and quit right smack in the middle of) and thinks she knows better. We did go to the ER when I was five and very definitely broke my arm, and I'm told we went when I had salmonella as an infant, but aside from stonkingly obvious emergencies like those, doctor visits just didn't happen.

[Except one. The only doctor visit I didn't have to fight tooth and nail to get was when I was fourteen and mentioned I disliked my acne. Within two weeks, I had seen a PCP, gotten a referral, and was sitting the lobby of a local dermatologist who decorated his waiting room with Looney Tunes animation cels. I liked him; he addressed his questions directly to me, and at one point very politely threw my mother out of the room so I could answer them. That actually turned into a bit of an ordeal -- he tried oral antibiotics first, but it turns out that things that end in -cycline make me barf, so there was a bunch of back and forth before we settled on topical tretinoin, which was itself a PITA to get at the time. Not word one out of my mother about any of it.

Call from college begging for a therapist? Suck it up! Face unattractively bumpy? Clearly important.]

I don't remember if there was an inciting incident, or just an accumulation of smaller insults, but somewhere around the age of ten, I came to the conclusion that help did not exist. Or if it did, no one was going to give any to me. So I just stopped bothering to tell people when things went wrong. If I got sick and had to throw up while my parents were busy or asleep, I just staggered to the bathroom and did it, went back to bed, and informed the adults the next time they cruised by. I had constant nosebleeds as a kid (common symptom of EDS, plus we lived in the desert) and I stuck a wad of Kleenex up my nose and went on with my day. 

Since "have my needs respected" apparently wasn't an option, I only had two ways to deal with stuff that did damage: Suck it up and ignore it, or sit the fuck down and refuse to move. I picked the latter more often than you'd think. 

It worked best when the person demanding I do something stupid was an authority figure other than a parent -- e.g., a teacher or camp counselor -- because then I could sic my mother on them. My mother loves feeling like she's Sticking It To The Man™. (Note that my mother is a suburban housewife with a backyard pool, hybrid SUV, and a husband who works in aerospace and has to tear apart the house looking for his Selective Service card every few years to re-up his DoD clearance. My mother is The Man. Congruence is not her strong suit.) To her credit, she did always tell me that if the cops ever brought me home in the middle of the night, she would know whatever I did was 100% my idea -- I was an extremely stubborn kid and petrified of getting into any kind of trouble, so if I was openly disobeying a teacher, there was probably a good reason for it. 

The supervising adult would threaten, "I'll call your parents," and I would just be like, "Okay, go for it," and then they would magically come up with some other way to resolve the problem, because they had all tangled with my mother at some point, and none of them were eager to do it again. It's possible that they called my father at work once or twice, but he would have just redirected them to my mother, and I'm convinced that the school office drew straws whenever her name came up on the caller ID to see who had to talk to her this time.

On the other hand, anything that so much as mildly inconvenienced my mother was cause for rage. The worst one I can recall was when I was in high school. at a dental appointment. I don't like dentists, partly for the normal reasons and partly because as above-mentioned my mother resents the existence of medical professionals and was incapable of not taking her mood out on her surroundings. For some reason, she though she could just not deal with that part by not telling me about the appointment until we joined it in media res. I don't remember what happened at school that day -- undoubtedly some random teenage bullshit, but when you're a teenager, that bullshit is very important -- but between that, and getting paged out of class unexpectedly as if there were some sort of emergency, and just general DENTIST, I had an absolute meltdown as soon as my butt hit the exam chair.

In retrospect, this was clearly some combination of panic attack and dysautonomia. I was sobbing hysterically and hyperventilating so badly I couldn't have given an answer to the people asking me what was wrong even if had one. I was physically unable to calm down. The dentist was beside herself. She tried everything she could think of, but in the end, I couldn't stop crying long enough to let the poor woman clean my teeth, so they just told us to re-book and come back later.

My mother was a ball of seething, silent, white-hot fury the entire drive home. The dentist and hygienist had sat with me for about a million years, asking me what happened and how they could help. My mother did neither, but did let me know that I had disrupted her entire day, and she was very unhappy that she had to drag me back and do this all over again.

Many years later, I learned that dentists were well aware that they made people anxious, and as long as you had someone handy to drive you home, a lot of them would happily give you some Valium to make the experience less dreadful. There's an excellent chance they asked my mother if they could give her minor daughter some sedatives, and she said no.

I can't decide whether she was better or worse about physical problems. She was objectively very bad. My mother's tolerance for pain and discomfort is unreal. My sister and I have agreed on exactly one thing, ever, in our entire lives, and that thing is: 'If Mom claims something doesn't hurt, do not believe her.' She never bothered to tell dentists when the numbing wore off while they were still drilling. She thought childbirth was easy. She broke hands and feet multiple times as a child, and by her own account she just wrapped a bandage around the offending extremity and ignored it. She did finally admit, in her 50s, that almost a year of chronic kidney stones, complete with stents and multiple lithotripsies, kind of sucked. (She did it to herself. Rather than hit up a doctor when the symptoms of menopause annoyed her, she decided to treat it with a preposterous excess of green veggies and soy products. Which are full of stone-forming oxalates. Oops.) It's not anything like CIPA -- we actually have the infamous redhead gene that eats Novocaine for breakfast and makes sore throat sprays worthless. 

I am unsure if her childhood included frank physical abuse. I am inclined to think not, because her social calibration is way the fuck off, and if it had she inevitably would have told us some sort of anecdote about it, thinking it was funny. But it is abundantly clear that her parents were not equipped with an excess of empathy, and that it was drilled into her at a very young age that her pain did not matter. My mother is more 'self-centered teenager' than 'literal sociopath', but that still means she assumes her experience is universal despite all evidence to the contrary -- so if her pain doesn't matter, yours doesn't matter either. To this day, I'm not sure whether she disbelieved me when I told her something hurt, or just didn't think it was all that important.

How much influence other adults would have had on my overall medical care, I don't know; my mother did have my insurance card hostage, after all. But I am still very, very angry at all the people who told me that my pain and discomfort weren't real, and I was just making them up to be difficult. I have permanent ligament damage in both arches because of a PE teacher who insisted that I run (well, "run") a mile even as I was gasping for breath and literally dragging my toes with every step, unable to lift my feet properly. Another PE teacher rolled her eyes and called me lazy when I spent most of seventh grade on crutches after re-injuring what the first one did. (To clarify, we did not go to a doctor to get the crutches -- my mother cadged them from a friend who had broken a foot sometime earlier, and forged my PE excuse note. Also to clarify, we had excellent health insurance that would absolutely have covered 'kid can't walk right, get foot x-rays at urgent care and issue mobility aids'.)

I avoided anything even remotely resembling exercise for decades, because I knew it would go just like my academics did. Agreeing to anything would start an endless round of the adults badgering me to do more and try harder. No achievement would ever be enough. As soon as they got one 'yes' I wouldn't be allowed to say 'no' anymore, and the only way to make it stop would be to go completely on strike, let them be mad, and wait until they got distracted and went to go yell at someone else.

Unbelievably enough, I do feel a bit sorry for my mother. In hindsight, she has pretty much the same core set of symptoms as me, as do her sisters, and as did her mother. I have limited knowledge of the rest of the family, but every blood relative on that side has shown at least some signs that I know of. A lot of the dysfunction around medical stuff stems from her just never having experienced anything different, and not knowing that none of this is normal. The unforgivable part is her reaction when I came to her with the problem. Instead of helping me find ways to cope, or even just sympathizing with me and agreeing that it sucked, she screamed at me to shut up. She genuinely thinks that everyone in the world is walking around in this amount of distress, all the time, and that trying to not be in this amount of distress is childish and entitled, like demanding that the world bring you a constant stream of food so that you never have to feel the slightest bit hungry. 

I'm sorry that she's that miserable, and feels compelled to suffer alone. But she could have chosen to behave better, and did not. Her isolation, at least as an adult, is her own damn fault.

Why the other grown-ups thought I was malingering, I have no idea. I seemed too young to have the problems I claimed? They were used to me being compliant and had no plan for my insubordination? General assumption that children are lazy and manipulative liars? Not a clue. But they all dismissed me without running any of the tests that would have proven I was telling the truth. I sincerely want to take the packet the PT gave me at the screening, roll it tightly into a cylinder, go back in time, and smack each and every one of them with it, repeatedly, until they understand what they did wrong.