You Not Me

Kanzashi is the name for hair decorations used for traditional Japanese hairstyles, currently experiencing a bit of a revival. Funnily enough, the most common use for a kanzashi by non-geishas and outside of traditional Japanese dress… is to secure a Chinese bun. I cannot find another name for a Chinese bun (the hair kind, not the food kinds).

 

 

Today I went to check on a jewellery order, because when I received the piece two weeks ago, it didn’t fit. Apparently this hasn’t been a problem before, so they’re replacing it and I haven’t heard a whisper about how much that will cost. Initially, I was told it would be 1-2 days to hear back from the manufacturer… and it’s been two weeks. Apparently, they sent off a new design without checking with me.

Last week I went in, because the piece fell out after a day. I wanted it put back in, and they refused. I was rather upset, so I walked out. Today they apologised, because they realised after I left that I was there specifically to have it put back in.

“But you have it back in now, so it worked out!” Um, no. I didn’t need to spend two hours fiddling with 1.5mm long screws. Apparently I do need to talk, even though you said I don’t have to.

 

And of course, ‘your hair is so nice! You always look so cute! But today with the swords! It’s so perfect! You look amazing!’.

I get this every time I go in, every time. I work hard to appear able to dress myself, because if I’m not wearing makeup I get ‘you’re so pale! are you sick!? let me help you!’ and that is more annoying by a smidge. Maybe a whole smidgen. But honestly, I don’t need to know either way. Certainly, comments on my appearance are not part of a routine business transaction. And yet, people feel entitled to comment. Strangers even grab me on the street just so they can intrude into my life to tell me what they think of how I look.

When you put it like that, it’s not really a “compliment”, is it?

 

Last week I was getting my mail and a lady stood between me and the door. She remembered me from the church I used to go to, one of the ones where I had to stop going because men were following me home even after I told them to leave me alone. (I’m serious. Three times in a row. And then I went somewhere else and people interrupted the service to comment on my hair and my dress and… you get the picture. Except that one of them was the deacon.) I tried to leave. I signed that I couldn’t talk. I yanked out my phone and typed to her that I couldn’t talk and I had to go. She just gave me her email address and said she would pray for me, and how do I deal with that, isn’t so hard? (She’s the one who introduced herself as ‘my name is … and I have a chronic illness.’)

 

I was out until 11:30pm last night because I had an audition. I was left in the foyer for two hours, with no heating, and then the choreographer yanked on my bad shoulder because my hand was cold, and then grabbed my waist from behind. Pretty much everyone who encouraged me to try (even though the rehearsal schedule would be brutal and the whole show would take over my entire life for six months since I would have had to put in roughly eight thousand million times more effort than a neurotypical person to do everything and remember it, because ‘drama is good for PTSD, I read a study’) is shocked that a complete stranger thought that was okay to do to me, or even to, you know, anyone. Dance workshops come with a waiver, now, here, if they’re going to do that, and if you don’t sign, they can’t touch you unless you’re, you know, in need of actual emergency medical attention. I quit my class because (in part) the teacher went on training and came back and bitched about how they told everyone not to touch without asking first. (Everyone also laughed at me if they tried to talk to me and I couldn’t reply, and then they resorted to ignoring me completely, and if they accidentally talked to me and I signed back, they apologised. I complained, and they said it wasn’t their problem. So, I quit.)

 

I went black, when she did that. I must have made words, in the black, because she stepped away, and I felt her shock and offense like a wave in the air.The audition was over rather quickly. It was sabotaged, anyway. I didn’t make it out of the building before I started crying. Naturally, I had to get through the old lady cabal at the door; they needed the details and felt they had to pet me while getting them.

 

When I got home I stripped in the garage and put my clothes through the washing machine – twice. I had to wash my corset, too, which is a thing that is not actually meant to be done. I ended up freaking out because the soap wouldn’t come out of the stitching and I ended up drenching it under the shower. Everywhere someone touched me I had to replace the phantom touch, that I could still feel, with pain, so I couldn’t feel it any more.

 

People suck.

 

So I’m trying to explain this to someone and they’re like “I don’t have it like that, mine mustn’t be real”.

Well, it’s real. If it is a thing that you notice even if it doesn’t impair you, it’s real. It’s no less, no more than mine. It’s different, because you don’t have my brain disorder, my unique set of triggers, my unique confluence of trauma, my occasionally invisible lesions, but it’s not less, because you can still work, or you can handle strangers not minding their own business, or you can avoid your triggers. It’s not more, because you can’t leave the house. It’s just different. It’s you. And that, dear reader, is okay. We don’t need to compare in order to compete. Yes, you experience a thing, and I understand, because I also have a thing, and I know how that can feel. That is all.

 

I managed to fall over on lino today. The wet floor sign was at the exit but not the entrance, my ankle twisted, and I executed a perfect disco fall. I even managed to get up by myself. I had to pretend that a lady didn’t run up and start screaming ‘are you okay oh my god’ in my ear and that the cleaner wasn’t glaring at me for getting blood on her floor (maybe she should have put one sign at each end instead of both at the one door, huh, I could probably sue, but I know what that’s like), and I got to my appointment, and I sat down in my spot, even though someone was next to it, because that’s my spot and I have a routine and I need my cor-damned spot, and I found the bandaids in my bag and I carefully covered up the gash so that I didn’t get more stocking fibre in it and I didn’t bleed over anyone else’s floor.

 

“Do you have a first aid kit, or something?”

Um, no. I’m a dancer. Or I was. I am. I am a quantum dancer, dancing and not dancing at the same time as time loops over itself and this thing both never happened and always happens, twisting in my brain and never stopping, always being new. And also I am really tired, I have a migraine, I have a cold, and I couldn’t cancel my appointment because not only would I still have had to pay for it, I would have been harassed on Facebook for not turning up. Again. (Apparently, Facebook is a valid way of conducting debt collection now. Who knew?)

 

And in all this I learned, today, that if I have a kanzashi in a Chinese bun, if I fall over (because I will, because the thing that kills me most about this whole thing is how I get uncoordinated on a moderate pain day), my hair will stay.

I guess that’s one thing I don’t have to worry about. (Remind me to tell you about the doctor’s appointment I had where the doctor pulled my hair and broke my corset.)

 

 

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The Nanny State

TW: opioid use, bad medical people, chronic illness and pain talk, drug use, brief mention of disordered eating.

 

In the news, yet again, are opioids. Prince is reported to have died from an opioid overdose, and so the media is again awash in scare stories about how opioids are dangerous, and they’re so easy to overdose on. I’m sure everyone reading this has seen one of those articles, and thought ‘but that’s not like me!’.

 

The truth is that we are right. It is not like us. I started with Nurofen Plus, an ibuprofen/codeine blend, after a concussion. I was given no treatment at the hospital, and had to make my own way. Six weeks later, I was diagnosed with post-concussion syndrome, and my hormonal migraines suddenly disconnected from hormones and became all the time.

I still take Nurofen Plus, even though at best all it does is make the pain less. I have a very good reason for this. My reason is that I am allergic to paracetamol, and I’m on a very long waiting list for the pain clinic. My psychiatrist is watching me go from acute pain to chronic pain (although arguably I was already there and he just is seeing it progress further, as it becomes more obvious and I grow more comfortable talking to him), and there is nothing he can do except say ‘keep working on getting it down’. He asked around, and confirmed for himself the thing I learned through very painful and demeaning trial and error – there is nothing else that I can take. I am also deathly allergic to milk, and I know from experience that the lactose, used as a binding agent or sugar base in many cheap pills, can set off an anaphylactic reaction. Until I get off the waiting list, this is the only thing I can take that will make it so I can get to medical appointments, do basic shopping and eating, and get more meds.

 

It’s not great. Everyone will tell you it’s bad – the ibuprofen destroys the stomach lining (however, my stomach lining was destroyed from vomiting several times a day when I was comfort-eating cheese in order to have an allergic reaction to get me out of that rather unhealthy workplace, and has healed greatly since leaving there and converting to a vegan diet. My relationship with food is still not great, but that’s nothing to do with the medication.) The codeine has side effects. It can be addictive. The latter is the reason it’s only available over the counter in pharmacies. The government were trying to make it prescription only, but they put that off due to significant resistance. In my case, in the case of people like me, and people who are in similar situations for their own reasons, that was a relief.

 

Instead, however, from April 15th of this year, the Pharmacists’ Guild of Australia came up with a different ‘solution’. It wasn’t publicised, and nobody was notified before it was implemented, so people going to get cold medication (for example, Demazin and Codral), will also be lumped in with it, caught surprised and perhaps denied medication they need.

This ‘solution’ is that, rather than just talking to a pharmacist (and the ensuing ‘you have to see a doctor, this isn’t the best medication, have you tried ground unicorn hooves?’ conversation with someone who doesn’t know the first thing about your medical history) for their approval, you now also have to show ID to get a codeine medication in Australia. This isn’t the case for any medication not containing codeine on that level, so you can still get things like thrush cream and heart medication and Epipens without going through this particular humiliation.

The first time this happened to me, the pharmacist shoved a poorly photocopied flier in my face and put it back away where I couldn’t read it, and I was desperate, so I showed my drivers’ license (not supposed to be ID) and got out. Since then, I have been making a mental note of which pharmacies ask me, and not returning. I now fit the popular pattern of an addict – someone going to a different pharmacy each time to hide their usage. I can’t talk, so the idea of having to go through this conversation each time is very hard for me, as it would be for people with various kinds of anxiety, or people who have privacy concerns, or people who are sick and their thinking is impaired, or any other reason a person considers valid for not wanting to have an invasive personal conversation.

The most recent time this happened, the assistant said “Aideee?” and when I gave her a blank look, made an annoyed face, shrugged her shoulders, and made a rectangle with her fingers. “Drivers license,” she said. She spoke with an accent. Without context clues froma complete sentence, the telltale flyer hidden far enough away that the fine print is illegible, and having not had to show ID there before, I had no idea what she was saying. She snatched my drivers license away and kept it behind the desk. The pharmacist wasn’t there. I couldn’t go back later, because they had taken my license out of my sight (this is a no-no, for any kind of card. They’re not supposed to take it, in the same way they’re not supposed to swipe your credit card for you.) and I had to wait for a small eternity, standing by the counter, my back complaining, and the tears threatening, because I had just come out of that horrible gynaecologist appointment, and I wanted my meds, comfort food, and home.

 

That flyer, if you dig around a bit, you can find on the Pharmacists’ Guild site. I don’t want to give them hits, so you will have to find it yourself. It’s not hard, if you have the right search string and a PDF reader. It contains many things.

Notably, and one thing that has never been mentioned, in any pharmacy where they have taken my ID, is that they record all the details, and by purchasing the medication (which you need for your medical treatment, so you can’t just decide not to get it), you consent to them not only recording your name, address, and license number, but allow them to share it on a database which is open to every pharmacy who is involved in this scheme, so that is, every pharmacy, and by extension, every staff member that works there. You do not have to do this for any other medication on that grade (S3), and not even to collect your prescription for things graded much higher.

We live in an age where you can verify your identity online with your drivers license number – I just registered for a postal vote with it, for example. By keeping these details and making them accessible, they Pharmacists’ Guild is creating a database that pharmacy staff, any mildly enterprising hacker, or anyone who can see the piece of paper they write it all on (I kid you not; I have seen this at two pharmacies, in plain sight, and I could have snapped a picture on my phone of everyone’s details as they wrote in mine), can impersonate you to government agencies, or anyone else linked to them for this verification process. Can anyone say identity theft?

The policy also allows pharmacists to deny providing medication based on how often you’ve used it in the past. This hasn’t happened to me yet, because I scramble for my phone and tell them that I’m under supervision and waiting on a referral for pain management, but as Nurofen Plus is more expensive on prescription, nobody will prescribe it to me, because they think it’s stupid to have me pay more for something I should be able to access freely. I still get variations on ‘well you should ask for something else’ and ‘this isn’t the best medication for you’, which everyone knows already. My former GP wouldn’t follow my gastroenterologist’s recommendation that I be put on pure codeine tablets, because he said I “couldn’t cope with rehab”. My psychiatrist was shocked by this, and thinks it contributed to my condition escalating to the point it is now (not being properly managed will do that), but he won’t prescribe pain medication because it’s, you know, not his job. I have, in the meantime, been put on migraine medication that made the migraines worse, have tried medication which gave me vertigo and left me unable to see for 15 hours, and been to the GP and the ER with allergy symptoms. I don’t feel like explaining all of that to a pharmacist to justify why I might need two or three packets in a week, and why I need that specific brand, and I prefer that size because the blister packs are smaller, and so on. My note, which I carry in case of emergencies, would be a lot longer, and the fact is that they don’t need to know all that. (We live in a society where pharmacists can provide medical certificates for leave purposes, so their job is already inflated as it is.) Their job isn’t to diagnose patients, or provide detailed management – their job is to provide medication and make sure it’s the correct dose and won’t interact with anything else and accidentally kill someone. So “are you on any other medication?” is fine, “do you have stomach problems?” is okay(ish), the time they wouldn’t let me have it without a lecture because I grabbed a pregnancy test for someone who was too embarrassed to get it themselves because of the lecture, not okay, and “you can’t have this because I saw you six months ago” is not okay. (That happened last week. She was a relief pharmacist. I know I’m distinctive, but it was also hilarious because I had to buy pads at the same time and the assistant saw that and apologised and wished me luck. In other words, there is a valid reason to repeatedly buy medication that has a positive effect.)

 

Eventually, I suppose, all pharmacies will do this, either by peer pressure, or someone will decide that it’s working when it’s really not, and make it compulsory. Technically, it’s legal, because pharmacies are private property, and they can put any conditions they want on entries and purchases (like bag checks – they are allowed to ask, but you don’t have to comply), but it’s not great, and it’s certainly not a good look. You can not show your license, and risk not getting your meds, and having to go home and make do, or go somewhere else and try again, if you have the energy for that, but the reality is that for many, many people, that’s not a choice. If you’re snuffed up with the flu and your brain is mush and you just need to get it and get home so you can sleep, you don’t want to have to remember your ID, and you probably don’t want germs on it. If you’re in so much pain that you can’t walk properly, and the lights hurt, and your outside clothes hurt, you don’t want to have to fiddle around with pulling a thin plastic card out of your wallet, especially if because of your condition, your hands don’t work. It’s not just that they screen people who really need it by who is willing to show ID and who isn’t, they are recording it and keeping a database. Technically, they are bound by the 10 Privacy Principles, but they also rely on disclosure, and none of the pharmacies I have been to who have opted into this are actually disclosing anything about how they are using the information they are taking and allowing people to make an informed choice. Sometimes I go to a pharmacy and they offer to open it for me and get a glass of water so I can have some right there, because that’s how bad I look, even in outside clothes and makeup. I doubt they would agree that someone who they can see is visibly impaired can and/or should be making choices about their privacy and medical information, either, but that probably didn’t occur to anyone.

 

I’m not sure what to do about all this. I can make a list of the places I’ve been asked for ID, but it would be so local that it would only help people near me, and would probably out me. I can maintain a database for everyone, but that would require server space and energy, and I’m not sure I have that. (If people start sending me their lists, though, I’ll make a separate entry for all of them.) I thought about making an online petition, but I’ve never actually seen one of those be successful.

Hopefully, I can at least get the word out, so that other people can make informed choices, and perhaps the market can push back on this. However, eventually the government will make it harder to get the medication we need, no matter what we say, because they already took these off the shelves, and made it harder, and they’re very obvious about doing it again. Perhaps, one day, I’ll be in a position to risk not getting my meds, and see what happens if I refuse to participate in their scheme.

 

But I don’t think having a medical condition should override my right to privacy, and put me in a position where people think they can decide what is best for me without even knowing me. If they want to have a say, they can recommend I sign up for one of their medication reviews ($5 for 20 minutes of how to take medication and whether you should take Cartia and Aspirin at the same time) and I can decline. Otherwise, it’s not their job, and they’re being an obstacle to any chance I, and people like me, have at functioning. Which sucks.

 

TL;DR: Pharmacies across Australia are now asking for and recording details from your drivers licence in order to supply medications containing codeine. This is not a government requirement. They do not tell you they are keeping the details. They take your ID away from you in order to record it. This is not fair, as other medications of the same grade do not require this.  They are justifying it because codeine can be addictive. People who are using these medications often can’t use anything else and are under medical supervision, and are not addicted. Please spread the word, and push back if you feel safe doing so.

Ugh.

Trigger warning: discussion of body parts, gender dysphoria, medical yuck etc.

Previous title: I Hate My Mirena And They Won’t Take It Out Because They Think It’s Just Because Of My Brain Disorder And That Is Totally Ableist And I Can’t Stop Crying.

 

I don’t really have the spoons for this, so this is going to have no structure. It won’t make sense. Things generally don’t make sense.

 

Because everything ends up all at the same time, I had the psychiatrist on Monday and today I had the gynaecologist. This is the one who railroaded me into exchanging my lovely side-effect-free Implanon with a Mirena, because she prefers it and it was heavily implied that the pain-stopping surgery wouldn’t go ahead without it (and it didn’t work!), and decided that I had endometriosis so she would admit me to hospital so she could cut it out.

(Fun fact: I don’t have endometriosis, or at least, not where she looked. She showed me pictures. I think it would have gone better if I had started crying instead of holding it all back and then falling apart halfway home.)

 

The gynaecologist dismissed my problems, and they are. Problems, that is. They’re really bad. After four and a half years being yucky period free, I have had six weeks of non-stop bleeding. I can feel this. It builds up and then when I move, like a vacuum being unsealed, it pops out and bursts, and I start to cry, because that’s not a bodily function that I can cope with since it doesn’t belong to me. I don’t have to deal with it, and I know this now because I haven’t. “It’s normal,” she said. I pointed out that she said 1-2 weeks, tops. “No, I didn’t, I would never,” she said. I have it in writing. Twice. “Oh, that’s for the laparoscopy,” she said. “The Mirena is always 1-2 months. Then it stops, and it comes back in a few weeks, until it stops completely, sometimes.”

The part where I said I already didn’t have periods and I needed to stay that way was as forgotten as the part where she gave me no information about the Mirena at all, because apparently I’m smart enough to look online all by myself, and she was out of leaflets. I’m assuming, because I talked about the bleeding and she said it’s normal, and she would have been the one to put it in, that I do have it after all. I couldn’t bring myself to ask. She did address the hospital incident. “You were quite anxious to leave, weren’t you?”

Well, obviously. Today I received an apology from the hospital, and they haven’t even investigated yet. It was that bad.

 

So then she tells me to keep trying with it, like it’s a choice I have. I already tried to cut it out, but I was shaking so much I couldn’t get through the skin. Hiding marks from doctors is so second-nature to me, anyway, that even if I was actually able to think, it still would have healed before I saw her. The only way it comes out is if she takes it out. She will be, as soon as she listens to me long enough.

“You’ve already done the hard work,” is really quite condescending, especially when my psychiatrist was telling me to go to the ER because the bleeding was not normal, stopped recommending medication as soon as I explained that I had been made to switch from an Implanon to an IUD, and told me to make the gynaecologist call him – the letter he sent a month ago, asking for a copy of my records so he could make a treatment plan, went unanswered. (In other words, this could have been solved by now.)

 

Because, as you may have noticed, and like many other people whose only recourse is screaming into the internet, the Mirena has a direct correlation with a significant and otherwise inexplicable overall increase in my general anxiety level, unrelated to PTSD and in ways not previously a thing for me. I don’t want a plastic thing in an organ that isn’t mine to be affecting my brain.

“But it’s only a little bit of hormones! And it’s not circulating very much!”

I wonder if that’s like how the little bit of dairy from something labelled “manufactured on equipment that also processes milk products” made me throw up for a week and the swelling in my throat was so bad I could only have rice milk for another three? Because a little, different, can be quite enough. And I’m not clear on how hormones can circulate not very much and yet the brain knows what and what not to send signals to create.

And also, I don’t want a thing in there. I’m not sure I ever clearly even agreed to it, to be honest, and I didn’t even know it was going in until I got home and reached up and found the strings and had to sit down because my legs wouldn’t hold me.

She also promised fewer side effects than the Implanon, because the hormones don’t have to circulate. I’m not sure if she’s used to explaining things to people who don’t have the same kind of grasp of medical knowledge that comes from three years of personal injury law, or if she honestly thinks that. The active ingredients released by the Mirena are different to those in the Implanon. There is no way to compare them like that; they even work in a different way – the Mirena releases the hormone into the uterus to discourage pregnancy by reducing the amount of mucus and lining produced (sometimes stopping periods if this is reduced to nothing, but…) while the Implanon releases progestin to stop ovulation in the first place, hence why I prefer it. And also, less pain. My brain less not mine.

 

“You still really want the hysterectomy, don’t you? But it’s not necessary, and you need to have lots of counselling. And it won’t stop the pain, because it’s all normal anyway.”

From the same counsellor who absolutely and totally manipulated and screwed my sister’s head into tiny little knots and sent her spiralling across the world. Yep, it’s that small a town. I will sit through anything at this point, but not that. I had to have the surgery to stop the pain. The pain is worse. “There’s nothing wrong, but that doesn’t mean the pain isn’t real. It’s like people who get migraines.”

You mean, like me, I wanted to say, but unlike my psychiatrist, my gynaecologist won’t let me use a computer to type to her. My phone crashed, because as great as it is, phones aren’t meant to handle heavy word processing, and instead of anything else, she made me write on printer paper.

I was so humiliated as I scratched out each letter, watching it come out backwards even after I sat there and tried to work out which way the b and the d went. I know she was told – my psychiatrist sends a letter in advance every time I go somewhere new, explaining what my brain does and how best to talk to me. Actually communicating, meaningfully, is impossible. She thinks it’s perfectly acceptable to leave me like this, because she can just change the Mirena under anesthetic, and nevermind the part where she has to change the Mirena at all. Or every time I say I don’t have periods I get told I’m anorexic, because I can’t choose that, because I can’t be not female.

 

So she finally decided she had to talk to my psychiatrist, because finally, finally, I get a pain management plan. And physio. Because it’s not like I’ve never tried physio, or exercise, or sports, and it’s not like those are so easy when you regularly find new numbers at the top of the pain scale. She even said physio will help with the anxiety and fix my brain. Because she has a Mirena herself, and it’s fine. And if physio ever helped with anxiety they’d be pushing physio instead of medication, wouldn’t they…

I left in a bit of a what-the-hell state, after I had already started to leave and she decided then to check the incisions, so I had to strip in front of her, and she started poking at my tummy (without asking to touch first, of course). Naturally, I then dropped everything because my hands couldn’t manage holding a corset (not easy to put back on, obviously), my bag, my phone, my phone case, and my bear. “Are you right?” she said, and I had to step back into the corner to avoid her touching me more. (Why do people do that?) I had been prepared for an ultrasound, since she sprang one on my before, and wouldn’t she need to check that the pain being worse wasn’t because the Mirena had perforated something (I am honestly praying for this. It’s the easiest way to get what I need.)

 

So then I get home and my mother wants to know everything that happened, because she has no boundaries, and instead of processing, I get to relive it all. Again. Then again, tomorrow, when she forgets that she already asked, or doesn’t understand.

So I don’t get to forget, not any more, and pretend that these are things that don’t apply to me.

 

 

I flat out stated that everything is worse now and this is not a thing that I can deal with. “Of course everything’s bigger now, it’s your conversion disorder,” she said, as if it’s going away. It’s not. And also, having a brain disorder doesn’t mean that I’m not serious, or that I don’t understand enough to make this decision, or that I wouldn’t want it if my brain was neurotypical, or whatever the hell is behind a statement like that. My brain works differently. It doesn’t not work.

The other thing that comes up, is “oh, your trauma wasn’t sexual”. It goes like this:

“Your trauma, that wasn’t sexual? So you’re fine with an ultrasound. Oh, you just had a pap smear, of course it’s fine.”

Or:

“You weren’t raped, so you don’t have any problems with the wand, just hop up and I’ll be back in a minute.”

The only reason I slept before the appointment today was because I hadn’t slept the three days beforehand, and I passed out over my Vita just long enough to have a nightmare. I was raped, but nobody cares about that. There was a significantly sexual component to the treatment I received at work, including being sexually harassed and victimised and assaulted, but nobody cares about that either. They assume that because I spend three hours getting ready, making sure my perfect makeup and pain-reducing, posture-correcting corset and St Gabriel bracelet are between my tears and them, that it doesn’t affect me. If I have makeup on, I can’t cry, because then I will look like a panda. Doesn’t mean it’s not completely dehumanising to be so thoroughly dismissed.

 

I wonder, if I cried, whether it would make a difference. I have thought about pulling the thing out, I read that news story about the girl who was trampled with a glass bottle inside her and I think that would hurt less, how can I make that happen? If I take the Mirena out by myself, then there’s nothing stopping periods until I can get someone to put another Implanon back in. My first Implanon took six months before the bleeding stopped.

It’s not just about the bleeding, of course. It’s not even about being subjected to this again and again for the next twenty-thirty-however-long years, and people talking about uterus and ovary and showing me pictures and telling me that’s mine and it’s so nice and healthy and how lucky and fertile I am while I’m making a sad hippo face and hoping they catch my disapproval. (I gave the gynaecologist a note today. It said the bleeding only slowed last week, the pain was worse, please write to the psychiatrist he sent me to bug you, and then at the end “i am asexual, genderfluid and childfree. i need this to be respected.” It hasn’t really helped.) It’s not even “you don’t have periods! you’re not eating enough! you’re so unhealthy your body can’t make teh babbies!”, because I can make that work when I want something to be done about something else, and that’s the only time it’s not absolutely soul-crushing.

It’s that this isn’t me, it’s hurting me, it’s a think I have to be constantly aware of, and I coped with it and then I learned that I can not cope with it and be okay and I am not going back to not coping with it.

 

So I am making a resolution now. I have to go back to the gynaecologist in six weeks. I am going to find my laptop, and type on that, even though carrying it is really hard because I have to carry everything on one side because my right arm won’t do anything and can’t take the weight. I am going to tell her that unless she puts an Implanon back in as soon as possible and refers me to whatever counselling she wants me to have to prove that I am serious about the decisions I make about my own body (which I shouldn’t have to do), I will take the Mirena out myself (it’s possible) and go and get someone else to put an Implanon in since I don’t think I can get one without a prescription (well, not easily. If someone can give me one, I would probably be only more grateful if they offered to do the hysterectomy. Or introduced me to Sean Bean.)

This isn’t my mountain. At least, it’s not my only mountain. But if I learned anything from that hospital horror, it’s that if I say something enough, someone will eventually listen.

 

Now, if you’ll excuse me, I have to take my OTC pain meds that don’t work (if I don’t take them, the pain is worse than it is now, but they don’t make it stop), and I have to go cry again. Because, in all of this, I am reminded, again, that there are body parts in me that don’t belong to me, and while they are there, people will feel perfectly justified in telling me what to do, how to live, who I should date, what I should wear, and my gender identity will continue to be denied to me. And, every day I leave the house, I will be triggered, retraumatised, and my psychiatrist is just realising that exposure therapy isn’t a great solution when the things you’re being exposed to aren’t meant to be normal. There isn’t a getting used to this.

 

 

When does it start?

Trigger warning: brief description of sexual violence, triggers, harassment, trauma, anxiety, PTSD

 

Today a thing happened. I was answering questions about my treatment history and every now and then this exchange happened:
“And were you able to talk then?”
“Well, I was having trouble, but nobody believed me.”

Putting aside the part where I reported a significant symptom that was ignored while it was much more easily treatable, there’s this issue that’s been a haze of maybe/maybe-not for some time. When did it start? What actually made it happen?

Okay. Backing up a bit, because I’m not sure I can ever make anyone understand what this is. The name for that part of this amorphous thing I have is functional conversion disorder. It manifests differently in every single case ever. I do not remember a time when I could have anxiety and talk at the same time. Apparently it’s more common in people who have some traits that would have them placed on the autism spectrum, but don’t present seriously enough to manage being diagnosed in school. Some people who are diagnosed with autism don’t talk, and that’s okay. For me, it is considered not okay, a thing to be overcome. I’ve described incidents in here where not being able to talk has caused people to treat me like a person who can’t be independent. I have survived with this thing long enough to know how to be independent, when allowed that change, but apparently, it is not okay for me.

I would be really happy not to have to talk again, because talking is stressful and hard and is about as much effort as it is for someone with a broken leg to walk up twenty flights of stairs with no mobility aid and no cast and the bone sticking out. It’s not impossible, with the right preparation, certain circumstances, the moon in the right quadrant, and a very good reason, however, it’s rather unlikely and the consequences are very severe. It’s an actual brain disorder.

However, being a brain disorder and not just a stress reaction means it was there all along.

When I was pushed off the flying fox in third grade and was crying so much that the teacher carried me over to the evil tree that Rita Repulsa lived in and I couldn’t tell her to put me down and leave me alone, and they ended up calling my dad out of work to come get me because I couldn’t talk so my arm must be broken? That was this.

When I was raped, my skin sliced apart with a blunt razor and I was left to sleep in a pool of my own blood, and then I was told it was my fault because I didn’t say stop? That was this.

When I spaced out and lost time, unable to even move, because I was so afraid to be around the person who did that to me again? That was this. The fact that he knew how to make it happen? Shows that it’s a thing that can be manipulated, meaning it’s a thing that’s always there.

So when I had a panic attack, and my words stopped, it was normal for me, even when I got yelled at because “it’s not that hard, use your words like an adult” and then made to go and apologise to everyone in the office for disturbing them because my work environment was so terrible it was actually rewiring my brain.

 

The question then becomes, when did it become permanent? When did it go from acute to functional? The thing is, it didn’t just snap like that. It didn’t go from one day being only during panic attacks, or when I was hurt or scared, to all the time. It went gradually, over about a year and a half. The panic attacks came more often, and they took longer to get over. It was harder to find words. I would stop in the middle of a sentence, or say the wrong word, or have to think of what the word meant, or what it started with. There were things that made it harder – doctors, of course, with their poking and prodding and inability to understand; the workers comp people, who flat out refused to believe me and instead threatened to leave me with no money to eat because I was not cooperating with the doctors who yelled at me for not being able to talk; my parents, who expect that I should get better because I got out, and don’t realise that that’s not how it works, and that they’re part of the problem; psychologists, who are happy to take the workers comp money but know if they do their job the money will stop…

There isn’t one thing that made it this way, so it can’t be easily fixed. There isn’t a thing to work on with therapy, because it’s so general that there’s very little that can be targeted. Because it’s a thing that my brain does all the time, medication meant for anxiety only makes it worse, because it’s designed to make things less, and that means it’s more work to get to the same level.

This is where it becomes clear that this is not a thing on its own. The fact that I got through all that above with very few effects and then ended up with PTSD from my old work should indicate just how bad it was there. In order to function and for me be independent, my brain needs to do this thing where it shuts off my talking and makes my typing jumbled and my writing come out backwards unless I bite my tongue and use my non-dominant hand and write in cursive and pray and scratch something until it bleeds. I still have all the PTSD symptoms, weird triggers (email! seriously!), but the fact is that while PTSD and conversion disorder are co-occurring in me and their intensity correlates, PTSD didn’t cause me to get conversion disorder, and conversion disorder isn’t a way my brain is managing PTSD. Instead, it’s basically like this: my brain has too much going on, and anything that can’t be dealt with right now is converted. That means that things like intricate thought, talking, maths, writing, remembering to eat, sleeping, and even being able to walk (especially being able to walk), turn into random neuron pulses that overload the parts of my brain that handle communication and language. Innate survival responses, like pain and anxiety, get through because they’re survival instincts and prioritised higher, coming through a more direct neural path, so they get through a lot more, so they seem more severe to someone on the outside. But they’re also muted, although not as much. There is a constant brain fog, like I’m asleep all the time. Comprehending things is hard, even, although I doubt anyone reading this would have suspected even half of what I’ve said.

 

The fact is, after I type this, and I force myself to make food (because when you’re allergic to at least half of the edible things on the planet and highly sensitive to pain, you basically have to make all your own food), I will probably pass out for something like fourteen hours, because today I did the following:
– I braided my hair (so it will last a few days so I don’t have to brush it or anything, woo)
– I collected mail from the shiny new post office box
– I put petrol in the car
– I bought flour and medication
– I went to the doctors
– I came home
– I wrote this
and now I’m exhausted, and sound makes my back hurt, and I’m on day n of a migraine so the screen is hurting my eyes, and doing all of this with my brain sending ‘yay! do this!’ to the wrong part, and with PTSD, and all the little pain things, after a panic attack yesterday, and having to deal with people, makes me even more exhausted.

And it doesn’t matter to me that I can’t talk. I’m done with being yelled at for not talking, because there isn’t any guarantee it will ever come back. And even if it does, it will go again. Instead of being like ‘yay! I must get better!’ I have to be like, ‘I need to manage this so I can function’ and ‘I need you to not be weird to me because I’m using one of the five signs that I can remember’. Other people function without being able to talk, and even without being Deaf. (If I get ‘are you Deaf?’ one more time, I am not sure I will have the spoons to not hit them, incidentally, because Deaf =/= mute). I don’t have the energy to be like ‘but why can’t I?’, because I have worked so hard to realise that a significant part of that is other people’s problem (seriously, if someone is shaking their head and signing ‘no’, that means no and you need to back off) and not my responsibility (because ultimately, people aren’t actually entitled to being talked to). This is how my brain works. It’s not because of anything that happened to me, although things happened that made it more obvious. It is just how I am, and that means I don’t fit into society like a perfectly cut jigsaw piece. That is a thing I am okay with, and if people can’t deal with that, I don’t need them making things worse for me, because all they’ll do is give my brain more stuff to funnel in different directions, and I don’t need that if I’m meant to stay functional.

 

Today I got a new word – ‘chronic’. Chronic functional conversion disorder. Because it’s actually a thing that doesn’t go away. That’s because it was always there.

 

 

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.

Broken

Trigger warning: stimming involving deliberate physical pain, harassment/discrimination on grounds of disability

The three year anniversary of my secret, unceremonious departure from work passed the other day, unmarked. I know what day it was because everything happened so fast – I had a day off, I made a doctor’s appointment, then I was shipped straight off to a psychologist, and next thing I had a medical certificate and I never went back.

Until a few months ago, I didn’t remember the actual thing that pushed me over from trying to do the socially acceptable thing and stick it out to walking out, shopping bags filled with my things and my mum on the phone, talking me through walking out because otherwise I would have been paralysed, stuck in an uncomfortable chair, scratching a new scar into some exposed piece of skin and not knowing how long it would take for the tears to run out.

I had tried to get out the right way of course, buoyed by patently unhelpful remarks like:

  • “think of the money!”
  • “you won’t get another job if you leave”
  • “it’s not that bad, everyone has things they hate about their job”

I had tried to look for work while I was still employed. The situation was so bad that the manager, who otherwise was doing everything he could to make it not his problem, pulled me aside and offered to be a reference. I suspect he was still at the point of thinking I was the problem, and thought that maybe facilitating a departure would be better for everyone; but still, that is an unusual thing. Everyone knew what was going on, even outside that insular little self-destructing bubble. I went for interviews until I couldn’t anymore, and I was told to “stay there; it’s good experience!” because I was never good enough for anywhere else. I sneaked out on my lunch break, called a bunch of recruiters and tried to sign up as a temp. They all said not to bother – they wouldn’t be able to place me, because there wasn’t enough temp work and people preferred to use temps they’d already worked with.

And so I took the only option that was left to me – medical leave and workers comp. That was its own special hell, but it was still a better hell than the one I left.

 

Except, and this is a thing they don’t want you to know, workers comp actually makes you worse instead of better, especially with mental health claims. I was written up as the standard term for otherwise-unspecified mental issues, a modernised secret code for nervous breakdown, “acute adjustment disorder with anxious and depressed mood”. It’s what they call an inability to cope in a situation when they can’t diagnose anything else easily, and it’s a shortcut that’s used to be able to actually lodge a claim, since a diagnosis is required to lodge a claim. As a result of being given that diagnosis, the ‘acute’ part being code for ‘short term’, I was forced into a return to work meeting only two months after, which took the place of my psychologist appointment, and I was expected to agree to return to work even though I had received no treatment and no medication was working.

I only got out of it by crying in the doctor’s office. The doctor, an older male, didn’t know what to do, so gave me what I wanted. It was a tactic I learned to rely on when nobody would listen.

As a result of that delay in diagnosis (which I only received six months ago, two and a half years after leaving work), I haven’t actually been able to access any treatment for my condition.

A further complication, is that, as I said, workers comp makes you worse instead of better. In my case, it was because I had to fight to even get what I needed from them. A lot of people realise how hard it is and choose to return to work and pay for their expenses out of their regular pay, but over 2/3rds of those people then still end up leaving that job. Of the people who fight, very few succeed in having mental health claims accepted, and the track record for physical injuries is not much better. In my case, the acceptance was something I fought for, and was a result of my very unique situation. But the effort put forward in fighting to get that far did nothing but exacerbate my condition, because the stress didn’t stop, and between lawyers and agents and insurers, I was constantly triggered.

Even when it was accepted, it wasn’t easy. Another thing they don’t tell you about workers comp is that they only decide to pay based on their own assessments of what you need. They control your treatment, and in some cases, deny it for little to no reason. I found a good counsellor, but they wouldn’t pay for him because he wasn’t approved through their insurance company. I had to go to their doctors for regular assessments, and if they didn’t say something was needed, it didn’t get paid for. I received no assistance for medication or re-training, because my claims agent ignored me, because I wasn’t considered well enough for a return to work. I couldn’t just slot back in to my old job, either, and not because leaving annoyed people, and it was clear that I wouldn’t be accepted back into that workplace when half the staff walked out in the space of three months. (I was the first. I made people realise they had choices. Go me.)

It was the continuing need to be monitored, subjected to assessments (with no notice and no support), and a general apathy to anything I had to say, that resulted in my condition escalating to what it is now. “I’m allergic to that, I can’t have it,” became “well, you have to take it or take a lactose intolerance test”, which makes as much sense as it looks. (I still haven’t been able to unconvince anyone that I’m not lactose intolerant, by the way. However, lactose comes from milk, milk is an animal product and I’m vegan, so I just say “I’m vegan” now.  People listen to that more than “I would have an anaphylactic reaction and possibly die”.) I had to submit a new claim for a pre-existing medical condition otherwise they wouldn’t let me take over the counter pain medication. Then they wouldn’t accept the claim unless I submitted to a full physical examination.

It was only a year after I left work that I began to lose my words, and a year and half until they went completely. It started so small that nobody believed me, even when I sat there and gaped because the word had gotten lost in my brain, or when I wrote and the letters came out backwards, or when I typed something and no matter what I did, the letters were not the word I typed. I had to quit dance classes because people were laughing at me because I didn’t talk (among other lovely things like telling me off for my clothes or my hair, deliberately misgendering me, and excluding me from social time), and it was too much to push my non cooperative body through contortions when I couldn’t snap back and say ‘my arm won’t go that high’ when I was told off for not having perfect form even though they knew I was unwell. ‘Straighten your leg or you won’t get better muscles!’ is not a thing that I could cope with on a bad pain day when my leg wouldn’t straighten and my knee wouldn’t support my weight. I had one last interview, but the words didn’t come out and naturally, I didn’t get it. Soon, assembling carefully individualised applications was too much effort, needing days instead of hours and enlisting a proof reader only meant that my applications were censored because they weren’t “nice” enough. So, I stopped that too.

And then, I had an assessment for workers comp, and the psychiatrist yelled at me for ten minutes because I couldn’t talk. I had tried desperately to get the appointment changed so somebody could come with me – they had refused, even when I enlisted two lawyers and the Ombudsman. It was on my medical certificate that I couldn’t talk, and they had kicked me out of a meeting for not being able to participate, so it’s not like they didn’t know.

But he yelled at me, told me he knew sign language and that my signs weren’t real (bear in mind that I have only managed to retain about 8 signs, because my language skills are just that shot), and I think he hoped if he yelled at me enough I would be shocked into yelling back. Instead I burst into tears and when someone finally got me a paper to write on I couldn’t even hold the pen for my hands were shaking so much. He said he would send a report that I was unfit for work because I couldn’t talk, and instead, I received a formal warning for non-participation and was told that my benefits would be cut.

 

I received a diagnosis only after I signed away my entitlements and had to make to with a teeny tiny payout until I become eligible for welfare. It’s not even a complete diagnosis, because the one I have is so little known that they don’t know how it works or what it affects. They can’t treat it, either. I just have to wait it out and hope it magically gets better.

 

This is not just my story. Some people’s minutiae are different.For some, it’s a slipped disc that turned into a pinched nerve and ended up needing fusion. For some, it’s cancer from exposure to a carcinogen that metastasised and ended up being missed or undertreated. But the fact is that many people are told they have to stay in jobs that are literally destroying their brains, and then they can’t get the help they need because the system is broken, and then it’s too much to fix.

For me, it’s called PTSD. Most people will say something like “but you weren’t raped, or in a war, so you can’t have that”. However, if it walks like a duck that has nightmares and flashbacks and a paralysing inability to cope in triggering situations, it probably is a duck that has PTSD. Any trauma can make PTSD. But because mine went undiagnosed for so long, other issues have become intolerable. Dysphoria, for one, OCD, for another. They all piled on top of each other and magnified until my brain literally overloaded, and, like a surge protector, shut off to protect itself. They can’t tell if I’m in so much pain I can’t sit or walk properly because my brain says I am or because something is wrong or both or something else, because part of my brain doesn’t work. My brain has physically changed to reflect this, too – there are lesions which formed in that specific time where my headaches changed that correspond to times when losing my words became bigger, and where the pain is on any given day dictates how well I will be able to do things.

 

There are little things as well, things that people have no hesitation in calling stupid. When you fill out a webform and the box goes red because the input isn’t correct even though you haven’t even finished typing it? That makes me cry. I can’t check my email because if I get too many messages, that makes me cry. I can’t handle phones ringing, or microwaves because they make that dinging sound. There are certain words and phrases that trigger instant flashbacks. I can’t do deadlines.I have to avoid going to bed at certain times because I’m still conditioned to wake up before dawn so I can get to work in time, even though it’s been three years. I had to get that bus to go to the hospital, and I cried all the way there, never mind that buses cause migraines for me. I can’t have people hand stuff to me. I put something down and I can’t remember where I put it, even if it’s less than a minute later. The red line that says spellcheck doesn’t recognise a word makes me cry. I cry a lot.

If I had been given the right help when I asked for it, I would be back at work, with the cushy promotion I was promised, and everybody would know not to mess with me because when stuff went down I was tough enough to do the right thing for me and then enforce it. I was not, because the system is broken, and stacked against the people it is designed to protect. It is not just me who is left like this until they find someone who believes them or kill themselves. And now, I am faced with having to go on disability, because nobody knows when, or if, I will be ‘better’.

Naturally, I will have to fight for that too, and they will send me for assessments, and the same thing will happen again, because the system? Is broken. That can’t be changed. Correct identification and appropriate, non-compulsory treatment? Will allow people to survive in it. (I say non-compulsory, because if someone says ‘you have to do x useless thing or not eat’, it stops being helpful and becomes a source of resentment. Also, if it’s non-compulsory, they can’t control it, so people can craft it to help them.) Unfortunately, all these systems are broken because an inherent flaw – they are not designed to put money out, but instead, to keep as much of it in as possible. They’re not designed to be helpful, or to encourage being swift, non-judgmental, and correct.

That’s why there are entire industries dedicated to mining it, assisting with it, interpreting it, and breaking it down. There is not an industry dedicated to preventing a need for it.

I don’t even know if that would have made things better for me, or for people like me. All I know is that as soon as I get a letter telling me that I have to be at x appointment at x time or I will not be able to eat because they will take my entitlements away (and yes, as soon as you are approved for a payment you are entitled to it), it will trigger me, I will cry, and it will set my recovery back again, if indeed there is such a thing at this point.

Dealing with People, or not…

Trigger warning: people being generally not understanding, panic attacks/ocd in public situations

 

Every time I tell this story, in whatever way I manage (halting half-words to my piercer, word vomit to my singing teacher/speech therapist/general restorer of faith in humanity, skype text to my mum), people go ‘what? that happened today? but why?’

 

In order to regain my ability to breathe, because my abortives stopped working three months ago and 98% of medications have brutal side effects (including but not limited to: rashes that turn into lumps that turn into holes, allergic reactions, I sat in the car in a parking garage and typed out what I could remember, in the best order I could. It didn’t work, from a calming perspective, but it’s probably the best record I’ll get. Even now, it’s a fuzzy hazy thing that happened, but my traitorous brain, in order to get me through speech therapy, shoved it down and set my ‘recovery’ back another few months, because that’s what it does.

This is what I wrote, in a facebook post that probably gave a few people their daily ‘wtf moment’:
<meta http-equiv=”X-Frame-Options” content=”DENY” />

i went to get my mail and as usual they arranged it in the least stable way. something fell and i stepped back to get it and before i could some lady grabbed it and moved it further away i tried to stop her and that got all my mail taken away even though i was shaking my head and screaming no no no and the post office people’s solution? ‘can we call your mum?’ like what the fuck you let someone TAKE MY MAIL FROM ME then TOOK MY MAIL AWAY and you want to call my mum because you can’t listen when someone you know can’t talk is trying to say no don’t take my mail? i tried to explain and they’re like well you trust us how about we open it for you cos the inside is fine? nvm one of the envelopes was open and paper is permeable and that is not the point then they’re talking over my head ‘what’s wrong with her’ nvm that i can’t see my mail and i’m having an anxiety attack on the floor so i made them bring me a box and i scooped it up in a box once i found where they stashed it and now it’s in the boot making adam dirty and i had to drive into the city during a panic attack and i can’t stop crying and now i’m sitting in the carpark hyperventilating with my arms slashed up and i have to be fine but i don’t even know what she touchesd because i was trying to say no i am fine please leave it and they swooped in and took it all away so it’s all touched everything and it all could have been avoided if people backed the fuck off and/or paid attention enough to realise that shaking head + screaming = no but seriously i’m 30 years old you don’t go ‘can we call your mum’ and you KNOW i’m sick ffs and i refuse to feel stupid for being upset that some took my mail from me because i am an adult and i can pick up my own mail and ignoring someone saying no is rude and i have put up with enough discrimination from the people at this po but my brother won’t change his address so i’m stuck with it and if i go back next week and they say anything i will snap again bec i was trying to explain and what do they do? Snatch my phone away. rawr.
now i have half an hour to look fine and i just want to go home home like where i can’t hear the neighbours talking from inside my house and there are more than two stars at night and where they have parcel lockers and people know ocd is real and listen when you say no

 

Here is what is wrong with the whole incident:

  • the staff there know me, know that I can’t talk and I have issues around people touching my things, and yet not only allowed someone else to take my mail in front of me, they let her do it twice and then proceeded to take all my mail away from me, putting it in a place I could not see.
  • they let someone take my mail in the first place, while I was obviously doing my best to convey my extreme distress at her doing so.
  • despite clearly being an adult, instead of asking me what kind of assistance they could provide (including none), they defaulted to wanting to call my mother to come and get me. Most people offer a chair, drink, or an ambulance. (And yes, people have called the ambulance on me having a panic attack, and I went with the ambulance people to get away from the people who were making it worse, and that is a story for another time).

I said in my post that I refuse to feel stupid for this. It did cross my mind – i’m an adult i should be able to get my own mail without people interfering – but that applies to everyone, not just me because my brain works a different way. Even if I’d been perfectly calm and able to say ‘don’t you dare touch my stuff you complete stranger’, it still wouldn’t have been okay for her to interfere, and the staff’s reaction was still wildly inappropriate, especially after I did my best to make my lack of consent known.

The other thing that comes up in this was that they said ‘but you trust us with your mail’. I do not. I cope with them handling my mail in a very specific way that generally involves making as few trips as possible, opening all my mail outside the house so that the packaging doesn’t come in and the smelly air inside can go away before the items come in. The thing is, also, they have somewhat of a monopoly over the mail, and it is marginally better to have a few people whom (I thought) were aware of my brain thing than deal with a ton of couriers/my neighbours (who also take my mail), or go to shops. Or it was.

Some people might, at this point, be blaming me for the fact that these incidents occur a lot. Frequently, anyway. But every time I tell someone about one of these things, they go ‘what the? why would someone do that? you’re clearly capable of doing that on your own’. Invariably, also, because I can appear quite able, the interference happens before my disability becomes apparent. It’s my lack of brain spoons/skills/processing power to deal with these interventions in a socially acceptable way that spins them in the direction that they go, and that then affects me. It sets me back, because the thing I’m meant to be doing is teaching my brain to handle stress without routing it through the bits of my brain that are responsible for communication, and in order to deal with these incidents and get to a safe place, I have to push the stress away in order to function, which is only repeating the same pattern, reinforcing the bad thing my brain has done all my life but nobody realised until it got to the point where it was permanent (Trufax: A former sexual partner used to trigger acute conversioin episodes because he enjoyed it more. He got really upset when I explained that was rape, and still to this day denies what he did.) But we’re not allowed/encouraged to fully express emotions in public, and apparently even people who are meant to be aware and understanding, can sometimes not be.

So, no, I do not feel stupid for having an anxiety attack because a stranger decided to steal my things and trigger an OCD reaction, a thing which is still new to me because all these things that were tolerable before are now manifesting in hugely significant ways because every time one of these things happens, my brain decides that it’s better right now to do that thing because I have to drive/have class/have the doctors. The thing that I’m meant to be working on is the only survival mechanism I have, and every time someone sets it off, they are hurting me.

When I discussed this with my psychiatrist, because at this point it’s looking like a thing that will never go away, he said that normally he deals with this kind of thing with exposure therapy. Exposure therapy worked for me in the past, even. Except for one thing:

He said that people behaving like this isn’t normal, and he doesn’t want me to get used to stuff like this because it’s not normal. Not me, not what my brain does, not when my body doesn’t cooperate, but them. Other people’s reactions are not normal, and when they realise that I’m not the same as them, they become extreme.

That doesn’t make me stupid, less capable, weak, silly, or anything else negative. It just means people don’t know how to deal with different.

And also, that they can’t mind their own business. That is also not my problem.

So here’s what you do when you feel like taking someone’s stuff, interfering in their lives, or you think that you might be able to provide appropriate assistance to someone who indicates they might need it.

You make sure they can see you, speak clearly, and ask if you can help. If they say no, shake their heads, back away, or give any visual indicator of discomfort, you back off. If they accept, by saying yes, nodding, or giving a visual indicator of assent, you ask how they would like to be helped. If it’s me, you’d be saving another three-six-nine-twelve-forever months of a recovery from a thing that is so rare that nobody knows how long it’s meant to take or even how it’s meant to work (my psychiatrist is a specialist and he’s guessing). If it’s not me, then the very least you’ve done is treated someone with respect and allowed them autonomy, and the chance to accept assistance (or not) on their terms. You might be the only one that day.

Like, today, I went to get my medication, and the pharmacist smiled, and gave it to me without the list of questions that gets longer every week. “You know the drill, darling,” he said. I didn’t have the spoons to be angry at being called darling, but I was so grateful to not have to fight for one tiny thing that it mattered less.