The Assumption of Autonomy

TW: medical things requiring a gynaecologist, medical treatment and disability, disability discrimination

 

I’mma say this once more, and only once. Being disabled does not and never should come with the assumption that I do not have bodily autonomy or the ability to make decisions about my body. It also should not come with the assumption that saying stupid stuff should be taken as medical advice, because really, drink more water! eat more food! would have stopped my migraines over a decade ago if it was going to work, wouldn’t you think?

 

What I dislike most about my situation is that I have to fight for every ounce of respect I get. I don’t talk. I am perfectly capable of expressing my thoughts and wishes by typing and, increasingly, by signing. I still have enough intelligence to understand what’s going on around me, and, increasingly, to explain it to others. Just the other day I was explaining union organising theory because certain people couldn’t understand how requiring people to take off their bras to go through security could be considered the least objectionable option. (This is a thing, btw.)

 

So I haven’t slept or eaten today because I had to go to the gynaecologist. Again. And I was told, again, that because I can’t talk, I can’t have the hysterectomy I have been asking for for years, since before I couldn’t talk, since before everything. And you know, it’s risky and I might have pain after and because I already have pain it’s too hard! (Never mind that by already having dealt with chronic pain, I have support already in place and am equipped to deal with it.)

Continue reading The Assumption of Autonomy

That’s not how it works – Conversion Disorder edition

TW: conversion disorder, discussion of psychiatric illness

Spoilers for Chicago Med episodes 1×08 and 2×17

 

So I like to laugh (inside my mind) at medical shows. When I watch more than one at a time (e.g. Code Black and Chicago Med), I see how they often have patients with very similar stories and conditions within a very short time, if not on the exact same week. I see how the patients become the B-story foil for the doctors’ emotional arcs, I see quite a few variations on ‘that’s not how … works’ – things like sterilisation (or lack of), ER doctors overseeing day-to-day care on long-term or chronic conditions, rare conditions being instantly diagnosed and cured in 40 mins.

 

Last year, I was actually really excited to see conversion disorder mentioned on Chicago Med, although I agreed with the rather loud internet reaction at the time, that using it the way it was used wasn’t responsible and devalued an actual real physical diagnosis.

 

Since then I’ve been put firmly in the position where my real physical issues have been flat out dismissed because I have a diagnosis of conversion disorder. Everything, even things which predate the incident which supposedly precipitated the conversion disorder, is written off by my psychiatrist as psychosomatic – sore throat and low thyroid levels? just my brain not wanting to talk! – I can really understand and empathise with that position. Except my psychiatrist, somehow, positioned himself as directing my physical care as well, which has actually prevented me getting physical medical care, and so I’m the other way around from what was in the show.

 

Now, it normally takes a few seasons for these types of shows to begin repeating themselves, except for things which are really common or dramatic (pregnancy, heart attack – things which function as plot shortcuts that most people understand), or are things which are repeatedly shown so that viewers learn them as plot markers (for example, dead body + broken hyoid bone = strangulation, even though that’s not strictly true in real life).

Imagine, then, my surprise when the new episode of Chicago Med pulled it out again.

SPOILERS below the cut

 

Continue reading That’s not how it works – Conversion Disorder edition

Small Things

I’m so excited right now and nobody seems to get it.

 

Last September I was meant to be referred to the public pain clinic in the hospital where my psychiatrist is. It didn’t happen, which I found out in, like, July. I did not want to go to the one the gynaecologist of doom and dismay and “it would only bleed for max 2 weeks” recommended, because it’s too far for me to get there on my own. I got referred there anyway, and they started ringing me at all hours. I kept saying no, and agreed to see someone else, but instead, I got referred to the first one again, so they kept ringing, as if by peer pressure they could suddenly make the words come out and in order.

 

But yesterday? I finally got told that a referral would go through to the one I agreed to see instead, in July. It’s November. I really want to go to the one in the hospital, because, you know, it doesn’t cost $300 an hour. They have a waiting list, and apparently I’m not allowed to be on a waiting list, even though if I’d been referred fourteen months ago, I’d be at the top by now, not being harassed by pharmacists. (Yesterday was “don’t be afraid to tell the doctor how much you’re taking so they know how much pain you’re in”. They know. We’ve tried everything else. That’s why I have to go to someone who’s allowed to prescribe things that are restricted.)

 

Yay?! It shouldn’t have taken this long. It shouldn’t have taken me dragging myself in with a migraine and everything except the abdominal-no-pelvic-no-muscular-not-neurological-now-neurological-because-not-endo-and-one-test-to-rule-them-all at “worst send help and kittens on ice” levels for the psychiatrist to go from “you’re probably addicted to the pain medication” to “well, we can’t do anything about that because you obviously need it”.

 

Well, der.

 

And then I even got a blood test! Imagine that! Nobody’s doing regular blood tests. Sure, the fifth test in four years sounds like a lot, but it’s really not. Now I have a really pretty bruise in my elbow, because the needle went in sideways a bit and pulled, and so there’s a red line surrounded by bluey-purple, which is my favourite kind of bruise, and I totally get enough bruises to be allowed to have a favourite kind.

 

Meanwhile, one side of my neck is so swollen its starting to be visible even to people who don’t know me. But you know, that’s nothing. At all. As usual.

Being Too Visible

TW: disordered eating, medical professionals being sucky, gender biases, religious discrimination, workplace harassment, self harm

So, the reason I knew I could no longer stay at oldwork wasn’t that I was sick of every day being assessed on what I wore – how conservative-professional-female it was, how many times I had worn that dress before (there was a spreadsheet involved, I believe), are you sure you should be wearing those heels – or that I went from being overworked by doing my supervisor’s job (illegal) as well as mine and half of the department’s, to being the receptionist and assigned more work “because that’s what you need”… as if working for the man who actively prevented me getting the work I already had done so that he could harass me about being spiritual and Catholic, or whatever else was on his mind that day, and who whistled at me when he wanted my attention, is what I needed. Or anyone needs. Ever. It wasn’t that the one time I went in on my day off, dressed as myself, that the level supervisor followed me around, measuring my skirt and going “is that really professional”… on a public holiday, when the office was closed.

“I am here on my day off, and I had plans already;” I said. “I’m dressing comfortably today.”

Comfortably being a minidress and boots and enough chains to secure a trailer. But still.

 

Continue reading Being Too Visible

Time for Miracles

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.

 

 

 

 

 

 

 

 

All Apologies

TW: description of an anxiety attack, PTSD and triggers, reference to sexual assault

 

I sometimes (no, all the time, but sometimes sounds nicer) feel like apologies serve the person apologising more than they do the person being apologised to. I never feel better when someone tells me they’re sorry they hurt me. It doesn’t mean anything, really; people say it because they hope you won’t sue, they say it because they want to end the conversation, they say it because they want to feel like they’ve fixed things.

 

I can’t remember if I mentioned this, specifically, so I’ll go through it again. I discussed my anxiety on an anonymous forum. It’s anonymous, so my name, my online name, my other online name etc. weren’t attached to it. That’s meant to be respected, though when I brought this up with the people who run it, I was told it was my fault for providing too much identifying information and they’re really sorry but they can’t do anything.

First the response was like “well it’s easy, you can just email someone about it!”

Then it was “well, by having anxiety about email because it’s a PTSD trigger for you to have unread emails, you’re being a bad person!”

Then it was “well, it’s not real anxiety anyway, because they said they emailed someone before!”

I haven’t been back since to know how much worse it got, but there are actually other ways to talk to people online other than email, and even so, anxiety doesn’t work like that. Sometimes you can do a thing, and sometimes you can’t. Sometimes you do all the yucky things together and then go do happy things to make up for it. Sometimes you’re just in a better place to cope with it, or you push through because it’s necessary then deal with the fall out. This latter is a thing I can’t do, because that sets up flashbacks, and then it turns into a PTSD episode, so I don’t do it unless I literally have to, because the consequences are worse. It takes a few weeks to get back to a balanced point, and I have to self-care even more in that time, and I don’t have to explain that to people, usually.

 

So when I came back to the computer,  I had an email from a total stranger to me, who had identified me as the person from the anonymous forum. The email started off with “Not to make you anxious, but…” and explicitly stated that an anonymous forum has no expectation of, you know, anonymity. I cried and didn’t sleep for two days, and agonised about replying, until the voices in my head got too much, and I had to reply just to shut them up.

So then this person wrote back, just to say sorry. They knew their email had hurt me. They knew they crossed a line. So they emailed again. I don’t know why my server-side block didn’t stop it coming through. But this apology only served them – it hurt me again, because it was an email and I didn’t expect it and I had nine emails and that made me cry. The email said nothing important. They knew that emailing me hurt me and deliberately chose to do it again, because their desire to say an apology outweighed my desire to be left alone and not receive emails in the first place, or have my identity outed. They, essentially, forced me to be part of a conversation to make themselves feel better.

 

I don’t feel better that they said sorry. They’ve extended the time that I have to suffer. Their apology doesn’t help me sleep without nightmares or feel safe checking to see if my mum sent me a cat picture.

 

 

I wish it was just them, but this seems to be a thing in society in general. When this was all new to me, and I was only just off work, I was assaulted and encouraged to report it to the police, since it fit the pattern of a serial case that was currently heavily publicised.

I had to go to the police station at 1am, otherwise they would send officers to my house, even though I had a flight to catch at 6am, and when I was there, I had to demonstrate the places I’d been touched in front of a crowd of drunk male people, at the front desk. Obviously, I didn’t get the job I was flying out to interview for, because I was so tired my brain stopped working. I also had bonus assault on the plane, because apparently being asleep doesn’t exempt you from the food cart, and flight attendants will ask the man next to you to hit you so they can ask if you want a drink, even though you already have one. It was fraught with issues, and as usual, I assumed nothing would be done.

A few weeks after, I had just woken up (at the respectable time of 11:30am) and my phone rang. This was when I was still stupid enough to try to answer it, before things got really bad. Obviously, my ability to communicate was rather impaired, coupled with the clumsy pre-fuel morningness that most people get at least once or twice. This man’s entire job was to deal with “victims of crime” (their words, not mine) and he spent half an hour yelling at me for being asleep during the day. Never mind that I was, you know, sick and not working; according to him, I was only allowed to sleep during the day if I worked night shift. He would not believe he was wrong, and even pulled the “let’s start this conversation over because you’re not cooperating” card. I gave up, yelled that I didn’t want him to call me again, and collapsed from the effort. When the case was over, and I’d dealt with the investigating officer directly (who was incredibly respectful,and behaved exactly as I expected), I put in a complaint.

Eventually, I received a letter from the acting commissioner for police complaints.

He was not amused with me, and I feel like I’ve gone through this before, so here are the highlights

  • The person who took my call when I asked if I could report over the phone was very sensitive when she insisted on sending officers to my house, demanded my medical information, and refused to let me choose where I reported the incident.
  • The person who interviewed me about my complaint did her very best and obviously she wasn’t biased at all since she was a police officer and stated that most of my complaint wouldn’t even be investigated because it was too hard.
  • The man who had been yelling at me on the phone for sleeping when I was sick had apologised and, literally, “how dare you not accept his apology”. I had asked that he be retrained, and the response was “all officers go through training, so he doesn’t need to.”

Well, I said I didn’t want anything to do with him. I asked that he be retrained because it was clear he wasn’t able to actually do his job, that is, liaise with “victims of crime”, whatever their circumstances. Apparently they felt the fact that he wanted to apologise, you know, after someone told him I was offended (a fact he couldn’t glean for himself at the time), excused him from any wrongdoing. I had asked to have no contact with him – him wanting to apologise flies in the face of that. Apologising doesn’t improve his skills, or make him more aware that some people need to sleep a lot, or may have days off work, or be unwell, or just, you know different. (And, if he thought everyone had to be at work during the day, why was he calling me when he thought I was at work?)

I wrote back, I got a letter back, and I was so angry that I left it somewhere and haven’t read it yet. It’s clear they won’t listen, either. I hope he didn’t get to stay acting commissioner, though; I don’t even bother with the police any more, anyway. The last time I dealt with them, a man was threatening me in public, and they wanted to call me am ambulance. Because, you know, a man twice my size was threatening me.

 

Apologies don’t solve the underlying issue that caused the thing that someone decides they want to apologise for. Forcing someone back into a situation that is harmful or upsetting to them so you can apologise doesn’t indicate that you’re actually sorry you hurt them, or that you won’t do it again, because the very act of apologising is hurting them. Sure, apologies can happen organically, if you have a relationship with a person that is being maintained separate from the incident. In that case, though, you’re not going out of your way to force someone to accept it; you’re acknowledging an incident and making it clear you will do better as the relationship continues. There’s a context where you can ask how to improve, and sometimes there’s even a group to back you up or provide support. You do not need to force yourself back into someone’s sphere specifically to apologise, when there has been no indication (or a clear indication otherwise, as in my second example) that it is desired. All it does, most times, is bring up hurtful memories, retraumatise or trigger someone, and says to the person that your need to apologise outweighs their desire to not have to deal with you, or their desire to not be retraumatised/triggered/otherwise harmed.

 

There’s a social pressure on people to accept apologies. I’m not really sure why – part of it comes from the perception that a person apologising is lowering themselves somehow, or making themselves vulnerable. That’s not always the case – where there is no organic opportunity to do so, apologising requires a person to be intrusive and to use their power over someone to make them pay attention. There’s a growing fear of apologies; if someone apologises, it’s an admission of guilt that can be used against them in a suit for damages. Some people argue against that, with the idea that apologising is a social nicety,  a thing that people say to acknowledge an incident without taking the blame – “I’m sorry you’re hurt” = “I can see that you are bleeding, let me get a first aid kit”. If either is the case, it makes deliberately reaching out to someone to apologise meaningless, because it means nothing. Then you get the opposite, people who apologise who hope that it will make people not want to sue. Like, when I complained to the hospital about the way I was treated, they said they were sorry and the staff were sent to communication training. I don’t know how communication training is meant to stop someone flat out assaulting someone else, but they said that in the hope that I wouldn’t take the complaint further. Of course, they want to not have it happen again, because people can sue for that. I don’t feel any more confident that it won’t happen again, because it’s such an ingrained behaviour that clearly a seminar won’t help. They apologised twice, actually, in each letter they sent. I only want to know that the person who stripped me and took my comfort bear away then forced him back into my hands (when I had made it clear before hand that nobody was to touch him, and other people touching my things makes them dirty and I cant use them again…) is no longer able to do that to anyone else, and that the person who told me that the surgery wouldn’t be happening and then wouldn’t let me leave after it did, doesn’t get to deal with people any more. Saying sorry to me isn’t the desired outcome – it’s a way to minimise liability by manipulating social norms. If someone says sorry they know they’ve done something wrong, so if they say that they’re expecting to disarm the person complaining and prevent future consequences. In that case, the apology is a weapon, meant to reinforce power.

Except, you know when it’s possibly an admission of liability or a weapon to derail an argument or they know that by doing so they’re reinforcing their social position. No wonder it doesn’t really mean anything.

There’s another aspect to apologising, and that is the gendered one – a female is expected to apologise for speaking up in a business environment, otherwise they’re considered rude, even if a man doing the same does not have to, unless they’re considered less manly, meaning everyone who isn’t binary or a masculine stereotype also has to apologise for existing. There, it’s used to reinforce power in the other direction, because having to frame their speech like that to be taken seriously makes people feel less respected, less valuable, and less like part of the team. And so on.

 

Then there’s domestic violence situations, where the violent party apologises, manipulating the non-violent party’s emotions to make them stay. Also based in power, also reinforcing power, but not quite the same – it is aimed to make the non-violent party not trust themselves, because if they apologised, they won’t do it again, even though there’s that instinct saying not to trust it. Especially if there’s a big redemption arc, or another layer of power, or a promise.

 

It’s very rare that making a special effort to force yourself back into someone’s sphere just to apologise for breaking it is a good thing. It hasn’t ever been, in my experience. It’s a lot more powerful for someone to learn from it and move on.

In this case, apologising necessitated repeating the very action that caused harm. It shows a remarkable lack of awareness. I ended writing back and expressly stating I did not want to hear from them again, taking the blame for not being clear enough on that the first time, because as a non-binary person everything I say has to be softened and qualified in order to be taken seriously. I do not want to hear from you. I do not want to continue in a situation where you might feel it necessary to continue invading my personal space and making me cry and have voices in my head. I do not want you to take away my choice of whether I engage with you or not because you have decided your need to assert yourself and apologise is more important than my need to not be placed in a situation that will trigger me. There are so many layers and issues around apologies, and the word ‘sorry’ (which, being Australian, also transfer to ‘deeply regret’), that you can’t just expect that saying it it will make things okay again. Especially, when, you know, you’re preventing the person you’re apologising to from moving on for no other reason than your desires. Sorry doesn’t make it never have happened, ignoring someone’s expressed wish to not hear from you isn’t justified by the word ‘sorry’, and it’s very rare that just saying ‘sorry’ without any actual understanding of what you did informing your actions is going to be helpful.

Basically, it’s like this:
“I know that emailing you will make you have an anxiety attack and that you didn’t want anyone to know that it was you, so I’m ignoring that and emailing you anyway!”
“Yeah, um, don’t do that. That’s ridiculously harmful, wrong, and disrespectful, and you actively chose to hurt me. I don’t want to hear from you, this isn’t a discussion, I’m out of the situation now, move along.”
“I’m so sorry!”
All that says is that this person didn’t understand that they did something wrong, and chose to repeat their error because they sort of maybe got the impression that they possibly hurt someone and decided apologising would acknowledge that they screwed up. Unfortunately, apologising only magnified the harm they caused, and highlighted that they did not understand what their error was (they outed someone, they emailed someone who specifically stated that email was a trigger, and then did. it. AGAIN. when they were told not to.)

 

It’s still nothing on the scale of spectacular unawareness that led to this thing becoming so pervasive it’s functionally permanent. But, in that case, I get to choose whether I let that into my mind today, and I choose not to.

Because I have that choice. This other person took that away from me. Hopefully, if they still don’t get it, this time the server-side block works.

 

I really shouldn’t have to block people to prevent their stupid impacting my QOL. Nor should anyone be forcing themselves on other people because “saying sorry will make you feel better!” or “apologising will make everything okay again”. It doesn’t.

And now, because I typed that one phrase, I’ve gone and triggered myself. It’s not just a memory that’s uncomfortable and will go away. Nope. It’s the heartbeat-raising, hyperventilating, hearing-their-voices-in-my-head, feeling-like-I’m-there, sense-of-wrongness that means nightmares for a week. In a few minutes, I’ll start shaking. I would normally get my bear, but he’s dirty, and comes with memories of him being taken from me. Right now, I can’t breathe.

I had a panic attack at work, and I pushed it down and went to get on with stuff. I wasn’t allowed to get on with stuff until I explained why I was shaking. I wasn’t allowed to get on with stuff until I was walked around the office and apologised to everyone because their toxic work environment gave me PTSD.

So I really don’t want people to be apologising to me, especially if they’re only doing it because it is the thing they feel like they have to do, especially if it comes with them forcing themselves into my life via email which is marked unread because that’s how emails come, and if they’re not read, printed, acted on, filed in ten seconds that’s punishable by silent treatment and a formal complaint, a thing which they were just told not to do.

 

The best thing to do, if you screw up? Is not do it again. Not do it again because you’re sorry and that makes it okay.

 

 

Gender and Presentation

Trigger warnings: discussions of gender, sex, non-binary identification, and discrimination related to those, medical talk, and underage sex.

 

“When are you getting married?” my mum asked me, as we went to get fish and chips a month before my brother’s wedding.
“Do you think a man would get married to someone who doesn’t want sex?” I replied.
“Oh… no,” she said.
“Then I’m not getting married.”

“But you could marry a girl,” my brother said, when I told him about the conversation. Never mind that same sex marriage isn’t legal here.
“I’m not interested in girls either,” I said. My brother doesn’t believe me, because I wear purple, and apparently only lesbians wear purple.

I asked my speech therapist what he thought I was, and he said he didn’t know, but only after hesitating, as if he didn’t know what the right answer would be.

The truth is that I am asexual. I get a lot of the people who are like “but you just haven’t had it good enough yet”, because they think they’re technically brilliant enough to elicit a reaction that my brain isn’t actually equipped for. I also get a lot of the “but if I can’t make you come, then I’m a failure” kind of people. To them, not being interested is a thing so incomprehensible that they have to fit me into their little box. It gets offensive, after a while, when they insist that they want to try because they find me so attractive that they have to try, but if I’m not going to react in the way that they have me do in their head, it’s like I can’t consent, and they would feel bad.

 

I used to explain it like this: “my brain doesn’t register it, so it’s just boring to me”. I stopped trying to explain it at all when that was repetitively met with responses along the lines of “but your body reacted! You just need to be trained better.”

 

Going through six months of physically invasive testing and surgery, with random medical people going on about “you have such a lovely uterus” and “your ovaries are perfect, are you sure you have problems”, is hell to me. Worse is “you’re underweight, you don’t have periods, you know that if you ate more you would get periods and that would mean you’re healthy again! Just eat more!”

I have had a period for the last six weeks. I can feel it coming out, and I can’t stop crying, and everything else is worse for it. “Just email the doctor, you trusted her enough to operate on you!” Never mind that I was forcibly stripped, misgendered, and then assaulted, and not allowed to leave. Never mind they tried to force me into a pregnancy test, and told me I couldn’t have my surgery, then took me in without telling me what they would be doing. Never mind that I only agreed to try it  because I was told it was the only way to get the pain to stop, that there was no way they’d just take the lot out, since I hadn’t had enough counselling for them to be sure it was the best thing for me, and in thirty years I might have brittle bones, maybe. And then, she told the GP who told me that I couldn’t be asexual because I might meet a nice man and change my mind, and is therefore no longer my GP, that she was performing this procedure to improve my fertility… after she spent five minutes telling me there was nothing wrong with it, completely unprovoked, and in obliviousness to my increasing discomfort and attempts to make her shut up.

 

I don’t want periods. I actively took steps to stop them. It is in no way in my best interest to improve fertility, restore periods, or have these decisions made for me, because I am not a girl. I am genderfluid. I am not female, I am not male; I exist somewhere in between, where sometimes I forget I don’t have a penis, where the bits inside me are causing so much pain that it only makes sense to feel like they’re doing that because they’re not mine. I wear a skirt and a corset and heels because they’re practical, and people who go on about how wearing a corset makes things worse (also unprovoked) are only met with glares and silence. I speak silence very well, now. But all together, in the package that I create, they are me, and they are not feminine.
These things don’t necessarily go together. I’m not genderfluid because I’m asexual, I’m not asexual because I’m genderfluid. I’m not asexual because I was groomed for sex at 15 and forced into a paedophile ring and then vilified for both getting out and speaking out. I’m not genderfluid because my Barbies played with Power Rangers and rode around on remote controlled trucks. They both exist in me because that’s who I am.

 

It’s hard to get anything done when people can’t see that, or can’t see past it.