TW: rude people, sexual harassment, gender issues/presentation and dysphoria, suicidal ideation
You know, today was meant to be a twee little post about how I didn’t realise I started getting so many piercings during the period when I had to dress conservative business formal female, but I read an article about how some people with gender dysphoria get piercings and/or other body modifications to anchor themselves and get some ownership back over their bodies, brought to you by the panic attack sparked entirely by the fact that one of the gem ends on my angel bites fell out, not to be found again. I went to my piercer, who is going to try to get me a new one, and got a couple of other issues looked at, since my piercings on my right side, the one that’s affected by the hemiplegia, are all either swelling, leaking abnormally, or just being contrarily painful. (That pain is like an, ‘oh, hey, it exists’, in comparison to normal pain, btw.)
Instead, I experienced a series of events that made that post seem, well, twee.
First was the risking hellfire to acquire medication. I did get it, but to do so I had to put up with the pharmacist literally yelling at me (raised voice and everything) for three minutes about “this is for your own good so you don’t end up in hospital or dead”. Now. As you know, I don’t do talking, so basically, I go in with a note that’s way too simple, because I learned very early on it’s easier to just say one thing, rather than expect them to actually listen. So he had my note, which is just like ‘I have a migraine’. And he’s going on about how the medication can cause migraines. I saw the whole thing beginning to happen, and had my phone ready to type, and I started signing to him, and he raised his voice even more and ignored me.
“Back pain doesn’t cause migraines. You said it’s a migraine. I’ve been around a long time and I know all the stories.”
Because, you know, assuming things without actually listening to anyone is the best way to get someone the best medication, or something.
These are some of the assumptions he probably made:
- not actually in pain
I took the liberty of looking up ‘can back pain cause migraines’, and got a ton of hits. I didn’t read them all, because it is kind of a well-established thing that back issues and head pain can be related, because of how the spinal cord connects to the brain stem. I also got an actual article by a real live doctor about how clinically significant back pain and chronic headaches and/or migraines have a rather higher rate of comorbidity, and possibly share either a root cause or one directly affects the other. So, it’s not like I can’t have both, right? (Check it out here.)
Coupled with the fact that I very obviously limp and was wearing my corset on the outside, well.
It’s not the first time he’s done it either, but he’s strange, in that he’ll go on, but still give it to me, rather than the ones who just go ‘it’s too soon’ and if I try to sign to them, say if I don’t leave they will call the police. (And, literally, I’m standing there, leaning on the counter because that’s easier than standing, signing ‘headache’ and ‘mute’. Sometimes I can’t hear because of the aura, but that’s about the worst of it. I don’t understand it at all.)
So basically, he went off on someone who was literally in pain, actually requiring pain relief, because you know, not having pain relief is worse for the brain than having it, because of how pain, especially chronic pain, affects the brain, and said it was for their own good. Without, you know, checking to see if they were actually sick or not. Which I am. Even my parents believe me now, and my mum is the “well if you go for a walk every day everything will be fixed” kind of person.
I haven’t decided whether to complain or not, yet; if I complain, I may push them to cut me off entirely, but at the same time, to go from zero to 100 on the ‘barriers to service’ is just sucky customer service.
And then, of course, the whole dead part. That’s just a wonderful thing to say to someone who spends a good portion of time on the ‘at least the pain will stop’ side of the suicidal line.
And then, well, I went to my piercer, and while she knows that I greatly dislike being uneven, I’m still uneven, because one side has a plain ball and one side does not.
And then I realised I was stuck in teh city for two hours and I’d left my knitting at home, and I was just unstable enough that not having something to do with my hands was a bad thing, so I went and bought more needles and more yarn. And then I went to my actual appointment, and then I was walking back to the car, and I kept hearing grunting noises, and it turns out that someone was following me and masturbating.
Good thing I never drive directly anywhere, huh? I like, make it ten minutes and then have to stop, because sitting is excruciating (yes, even with pain relief, because it’s relief, not preventative). I don’t do more than two times in a row, otherwise it doesn’t subside for long enough for me to be functional at the other end. (That’s why I can’t get to certain appointments – if the train doesn’t go there, I don’t go there. Not that, you know, the trains here are very reliable or anything, but I tried buses again and I still get spikes from buses, so.) So I stopped, got takeaway, and then somehow managed to get green lights all the way home, which took exactly ten minutes.
I think I will write to the pharmacy. I won’t do it now, because my parents left this morning, and I want to actually sit on the floor without the floor killing that one nerve in my leg, which means I have to put everything back in the lounge, which then means another round of higher pain from all the moving. Tomorrow will do, and I think I will frame it as recklessness – by assuming one thing, he neglected to provide the correct advice, therefore reckless to the possibility that he could have done something to actually help. I mean, like, in the last six months, only one pharmacist has recommended anything else, and then she got her supervisor to come and yell at me when I signed that it made me throw up (her supervisor was like “I know you can’t hear, honey, but we can’t give you anything”). I know, paracetamol allergies aren’t as common, but honestly, I’ve had it diagnosed twice (I get a rebound headache after I throw it up and I get a big rash on my face). I have a documented reaction to lactose in medication, the time my GP was like ‘oh it’s not that much you can’t react to it’ and then was like ‘um, whoops’ when I went back with swelling and fever – after one dose. I have tried triptans, but because my primary migraine is hemiplegic, they only made it worse. I had four weeks of constant aura because I wasn’t allowed to stop until the script ran out and I had to go to three different pharmacies because none of them kept enough to fill it.
I’m not sure why anyone thinks I want to be like this – in constant pain, counting the hours until I can have another tablet and get maybe an hour where I can do things without crying. I had to get my dad to cut me a wrist brace, because I couldn’t work the scissors, and I made mashed potato for lunch – it was meant to be pancakes, but I couldn’t work the flipper, because my wrist was that bad… on my good side. Instead of having severe pain for one or two days that subsides to a barely noticeable ache, I have the pelvic-ovarian-groin-depends-who-is-talking-pain all the time, at a warm, redwhite ache that, when I sit, stretch the wrong way, move, you know, do stuff, turns whitewhite and sharp. I haven’t not had back pain since the surgery, when before if I had four days rest I could do without the tablets. That, too, is worse if I do anything.
(I have yet to hear of purely neurological pain being triggered by physical activity. If the best explanation is ‘the nerves misfire’, then the nerves should misfire at any time, not directly correlating with position and exertion, but if someone corrects me and then fixes it I would seriously be happy to learn a new thing there.)
I know, if I am not in pain, I do not need the tablets. I don’t think anyone else does, or wants to.
So we’re back to this very different fundamental thing – it’s easier for people to stick labels on something that they don’t understand rather than try to understand it. It’s easier for the pharmacist to yell at me and assume I’m looking for a high than it is for him to take ten minutes to have a conversation with me and ascertain that I am actually in pain that prevents me doing things, and be polite about it, because that’s what’s in his mind at the moment. It’s easier for him to do that because I am visibly identified with a subculture that people look down on, because of my piercings and because I don’t treat my corsets as underwear. It’s easier for people to blame me, because I’m one person they don’t know much about, rather than say ‘the system is failing here’, because we’re meant to trust the system and that it will look after us. There is still a gender bias in diagnosis, too – from autism to migraines to chronic pain, people who appear female get sent off with ‘depression’ and ‘anxiety’ a lot more, until it’s too late and many end up with permanent damage, if not a self-fulfilling diagnosis brought on by being misdiagnosed and/or undertreated. Then there’s people who have mental health diagnoses and/or are neuroatypical beinng ignored or dismissed when they go ‘no, this is an actual problem, please fix it’, which is where I’m at.
I don’t do labels, generally. People come out to me and I look at them and say ‘no, you’re a person – that’s not all of who you are’. Once someone puts a label on you, they don’t take it off, because that’s how people’s brains are meant to work – big filing systems. Mine doesn’t work like that – I remember people by context. Usually, actually, it’s their hair. My singing teacher is the way his hair curls at the point where his neck meets his shoulder, and sticks there when it’s wet. My dad is his beard. My mum has a bob. My brother’s hair is the same colour as mine. My grandmother used to sit at our kitchen table as she got a home perm, and I learned about the different kinds of comb as I watched the curlers come out.
Now, miraculously, I get four whole days at home. Once I put my stuffs back, I can rest for four whole days. I have enough tablets to get through the entire long weekend without going out.
First time in… a month. Ish. Yeah. Six weeks. I have three meals in the fridge, so I don’t have to cook for at least two of those. It’s going to be amazing.
But not enough.
I feel like going back to the pharmacy and being like ‘it’s been a week now may I have my meds please’ and seeing what happens. That would be amusing to me.
But, you know, I can’t help but notice that having to randomly go out to get more and prepare to fight for it every time is actually corresponding with more pain, and needing to function through more pain. I used to be able to get enough for a few weeks at a time and then just stumble out for appointments and necessities. And, you know, rest.
But at least he yelled at me and not someone who couldn’t see straight through it. The end result? I have even less trust in pharmacists than before. And they want to be the front line and take the pressure off GPs? Yeah, no.If your healthcare system is such that entire classes of professionals are overworked, you need to fix the system, not yell at the patients for being sick.
Excuse me, I need to stop sitting now.