TW: religion and illness, chronic pain
There’s a meme going around Facebook – part of it is that if you sing for ten minutes a day, your posture will improve. After a full year of vocal training, I still have scoliosis. (Or something. It just occurred to me, the other day, that I don’t actually know what I have. I know what my psychiatrist says that he’s been told, but I don’t have reports, scans, anything. So all I know about my back is this: “you’ve already worked out that corsets help your scoliosis” and “the other doctor says it shouldn’t be as bad as it is”. I caught a glimpse of a letter that mentioned T7-T8, and I have the x-ray report from 2 years ago which said scoliosis and mild spondylosis.
The problem with all that is, because of the way the IUD messed with my body, I have one corset left that fits well enough to mitigate back pain. I bought a new one with my tax refund, and I was super excited, because it was like, you know, hand made and from a niche retailer with a super good reputation. Yesterday, I managed to get it on for the first time – turns out that despite being marketed as for tight-lacing, it has plastic bones. This means, when I lace it, the bones invert from the pressure that I need. I was like, um, well, okay, that’s not going to help, but wait, if i wear it at home, like, maybe I can find a balance between being yelled at because some doctors still think corsets rearrange your organs and cause all your muscles to atrophy, so don’t ever wear corsets, and the above “corsets help, yay!”. So I tried that. Not only did it not work, and I ended up in more pain, but now I have a bunch of lovely pretty abrasions down the busk line and at the rivet points. Joy.
So there I am, having a super-high pain day, having to have put up with a creepy weird man infantilising me because my parents insisted on being present when the garage door got fixed, so my dad’s out there talking for me while the installer is trying to hit on me (total Daddy Dom type, too), and then somehow we got from there to watching a movie called Miracles From Heaven.
The movie is about the mother of a girl with a rare abdominal disorder. Basically, it’s presented as ‘girl gets sick, mother advocates for girl, mother is told it’s her fault because she’s a sinner, mother loses faith, there’s an emergency, mother prays, girl is all better, mother is special yay!’. So despite the movie taking pains to put in the script that people who say ‘you’re sick because you sinned, so repent and magically get better’ are not very erudite thinkers, that’s actually what the movie says. It was actually really offensive in that regard.
What I took from it was basically, ‘you’re not alone – other people are misdiagnosed and have to fight really bloody hard too’. Which isn’t very much, but.
Another thing I’ve noticed with religion is that even the more libertarian brands are somewhat anti-medicine. I’m not talking the ethical headlines, like pro-lifers or refusing blood transfusions, but the more insidious sort of new-age everyone-is-welcome types, where you know, if you eat “clean” food (ignoring how “clean” is not the best word to use, as it implies everything else is dirty based on a person’s judgment call), and you’re nice and positive to everyone, magically you won’t need “chemicals” (by which they mean caffeine, alcohol, medicine, etc) because you’ll be in touch with the earth and have no pain. I’m already vegan, which was a choice that basically came as ‘well, you already can’t eat that, and that, and that, and that, and that, and you can only eat that if it’s denatured, and because you stopped eating that you just don’t eat that other thing either, so you may as well just ditch bacon’. I already don’t do alcohol.
But because I can’t eat enough food to get energy to do things, I rely on the sugar in Coke to get through things like appointments and dance and class without passing out. I have not had success cleaning the shower with Coke, either.
And, of course, because I’m in pain, whether it’s “real” or “in my head” (which, if it’s worse when you do certain physical actions, like, say, sitting, or cooking… it’s generally “real”), there’s the pain relief. So apparently, according to the movie, if I pray/someone is converted to pray for me, the pain will magically go away and I will never be sick again. While, according to some of these other people, the pain relief is blocking my energy and making me unable to wholly commune with the spirits.
I mean, it would be really fantastic to like, I dunno, have a job, and be able to sit at a desk all day, in a room with lights on, and braid my hair every day, and play sport.
But every time I do what they say, and meditate and release and listen, basically all I get is ‘take the pills already, you can’t function to fill your life purpose if you’re in so much pain you’re biting your piercings so that you don’t cry’. Sometimes, a half-empty blister pack turns up when I’m low, as if “don’t be a hero, take the meds” is a thing upstairs. Cos, you know, maintaining a low-level baseline means that when it spikes, it’s less than it would be if coming from nothing.
So yeah. I think messages like that are reductive and dangerous. I mean, yeah, sure, a stereotypically healthy lifestyle is useful for minimising some things, but not only is science developing so quickly and corporations are running promotions that influence common thinking, but not everyone’s healthy is the same, nor is everyone’s functioning. It’s not like eating raw can substitute for a pacemaker, no matter how many people say it helped them cure cancer, nor is it like not taking pain relief is going to stop anyone being in pain.
That is actually what my psychiatrist told me on Monday. He thinks, if I stop taking pain relief, like, just stop, then the pain will stop, therefore I won’t need it. He then went on to tell me he didn’t understand what the pharmacists meant when they said they needed a letter to prove I was seeing him, that if he wrote a letter it would only hurt me, and it’s not his area anyway, because he doesn’t know how to treat pain.
It’s not his area, but he’s been perfectly comfortable sending me off to random doctors for physical tests and scans and interpreting the results and keeping the actual results from me, and he’s perfectly happy to say that he thinks I don’t need pain relief for pain that is literally so bad I can’t sleep or eat. Or something. I don’t know if that’s why he was very proud of showing me that he didn’t refer me to the pain clinic a year ago like he said he would, but I do know that that is at odds with everything else he says, which can be summed up as “people who have what you have generally know what’s best for them and what they’re ready for so we just go at your pace when you’re ready”.
It makes no sense, right?
So, it’s kind of like in the movie, when the mother is running around screaming I KNOW IT’S NOT LACTOSE INTOLERANCE (after equating it to being allergic to milk, which, no, anaphylaxiz =/= intolerance).
Except, you know, it was in the psychiatrist’s office, and they swore that I would leave on time knowing that I had to get to rehearsal, and I was kept in there for forty minutes past the end time because he wasn’t listening. I was sitting there, my brain literally just going ‘i’m going to be late they’re going to be mad’ and he was going on about how if I can’t access my pain relief then I won’t need it, and trying, again, to send me off to a clinic that I physically can’t get to. He physically shoved the form in my hand after I said no. Because, you know, not being able to sit for long enough to get there? He was like “you can just get a taxi.” And I was like “no, that’s not an option”. because, you know, it’s not like taking a taxi is going to magically stop the pain either, or not spike the migraine. I also have never met a taxi driver who will wait when you need to get out and lie down because sitting is too much and if you don’t lie down you’ll throw up.
So he’s like “I promise it’s safe!”
I suspect, also, he’s never been assaulted by a taxi driver after refusing to let them come in and have sex with him.
Then I got to rehearsal, sat down, and started crying, and so they all were fake concerned and patting me and I offended everyone by yanking away because that hurt. Wearing a dressing gown hurt, today, too.
Here’s another thing that doesn’t make sense. When I first suggested that perhaps there was a neurological aspect to my pain, the psychiatrist said “but you saw the best neurologist, he’s really good, he wouldn’t have missed anything”. So now that I’ve been through a bunch of flawed examinations (seriously, one doctor assaulted me and the psychiatrist told me it was my fault, no way is that going to be a correct and informed diagnosis, I mean, honestly) and he now thinks it’s neurological, either the neurologist did, you know, miss something, or he’s not the best, and just didn’t look.
So really, for the last year, things have just been going around in circles, and I’m stuck with singing lessons because if I stop, then he’ll keep trying to refer me for speech therapy again, because apparently the only way to get him to do anything is to say no to it. He was like “but at least now you have all the pictures!” never mind how traumatic those were (and incomplete – nobody has actually cared or looked at why I vacillate between urinating six times a day and twice a week, or why it hurts, even though the pain is literally right there), and that most specialists want their own.
I have an appointment with him again in eleven days? I think. When he was running late, I asked to reschedule, but I wasn’t allowed because he had no time before he went on leave (for the fourth time this year), and then he could put me in before he went on leave. I went in last time with a letter explaining things – I can’t make him understand that the IUD was put in without my consent, or that it’s caused things to seriously mess up, making not only the pain but the dysphoria skyrocket, for example – and outlining what I wanted at this point (maintaining pain relief at the current level, which = barely manageable; focusing on adapting not getting better because better is a ridiculous myth; referral to the pain clinic he promised a year ago). He didn’t take it. Perhaps I should have forced it into his hand. But I’m seriously looking at being like ‘okay, so nothing’s been done, you won’t do anything, you’re contradicting yourself, I need to move on’.
After all, this is how things work:
Me: “I don’t want the best. I want someone who will listen to me and look at everything rather than treating their little bit.”
Him: “Well, you were close with that other doctor. She emailed me, you know.”
Me: “She pulled my hair, broke my corset, and dragged me across the room.”
Him: “Well, it was difficult for you but at least you got examined!”
That doctor did actually pull my hair. She did drag me across the room. I was put in in an exam room and left there, attached to a tightening BP cuff, while she took a personal call. She yanked on my legs and asked five questions at once and then yelled at me for not trying hard enough when I couldn’t answer because I had no way of communicating to her and she just kept asking questions without even giving me the time to try to answer. She wouldn’t let me walk by myself because she decided I was “wobbly” and ignored me shaking my head and pulling away from her, so she grabbed my bad arm, yanked it above my head, and dragged me everywhere. I wasn’t allowed to dress myself, and she didn’t know how to work a corset so she pulled one side out of the lacing and one of the bones came out of the boning channel. She pulled my hair because I pulled the corset back away from her. I sat there, one leg dangling off the bed in the exam room so that the pain wouldn’t get worse than it was, the corset folded on my other leg, and she yelled at me for being independent. She then left me to change by myself, then walked back in a minute later and watched.
That is not okay.
This is not okay.
There was an article in AJP today (well, yesterday now), in which someone was interviewed about the tracking thing (which I had to explain to the psychiatrist because, surprise, doctors weren’t informed about it either), and the comments were basically filled with ‘this is made up’ and ‘the system is working, this faker can’t get drugs now’.
Which sucks, because the system is falling down (obviously not underfunded, with that much leave on offer) and people are being hurt, and everyone is so quick to say someone is lying, or it’s their fault, or they should just try harder, or, that they sinned and therefore deserve it.
This. Is. Not. Okay.
Either people are unwilling to understand, or they can’t. But it’s. Not. Okay.