Bah.

CN: medical stuff, gender stuff

 

I had the most horrible doctor’s appointment in a while yesterday and it’s been a day and I haven’t stopped crying.

Broken is broken

Contains SPOILERS for the BBC show ‘Broken’

I’m going to cut all of this, because seriously, this show has so many triggers in like, four hours (so far), that like, it’s hit the red exit button for everyone I know. Everyone. And in my view, some of it was entirely unnecessary or unnecessarily explicit. But! So under the jump there will be the TW, because apparently some people got past the first five minutes without putting all the pieces together and I do know at least one person who hasn’t even watched those.

Blah.

If you look back, you might see a few posts about the time I called the police and got screamed at because some guy was randomly scraping paint off the front of my house, and the police said it was strata so my male neighbour knowing about it was enough, even though I had already spoken to my landlord/parents and strata had been unable to confirm this was a thing that was meant to happen. Yeah.

it never ends

TW: privacy, dentists, grief, references to inter-family abuse

 

So, I managed to get home for my grandmother’s funeral after all. This came about because, by virtue of not driving the six hours each way to collect me, my mother attended the meeting with the funeral director and took the responsibility of organising the priest and so on. (It was also necessary that she attend since she’s the one who has the lease on the grave, but such practicalities don’t actually rate as necessary when one isn’t thinking rationally.) A few days later, she offered to pay for a flight down, and then couldn’t understand why it didn’t cost several thousand dollars.

Then she admitted that she hadn’t wanted me to come because she thought the funeral would be too short to be worth it and she didn’t want me to remember it badly. (Or something, I mean, seriously?), and then that she should have handled arranging things better rather than letting everyone else take over, after it came out that other people were upset about it too, but too afraid to speak up, because about the only thing that part of my family doesn’t do to each other is resort to physical violence.

I Am

TW: family drama

The fact that I have a disability does not change the following:

 

I am thirty one years old and I am capable of making my own decisions.

 

I am able to ask for what I need.

I am able to take what I need.

I am able to speak for myself and advocate for my needs.

 

I am able to self-care. I am able to assess when I need self-care and take it.

I am able to see when my needs are not being met.

I am able to stand up for myself.

I am proud of this and even though I am not perfect, I am proud that I still try to be better so that I don’t fall further down than I can claw back from.

I can’t talk but I still have a voice and I still have the power to use it, even when it only means I hurt less instead of I hurt more.

I have the ability to take myself out of harmful situations so that they don’t affect me as much as they could.

I have the ability to say ‘No’.

 

Road Rage strikes again

TW: MVAs, verbal abuse, police people

 

I have my new computer at last and there are so many little things I know now to appreciate – a dimmed monitor, a seat that hurts less, an ergonomic keyboard…

 

This just means that I am able to relate to you today yet another example of why I, as a person with a disability/disabled person/neuroatypical person/etc., will go out of my way to avoid dealing with the police. A lot of little things happened today to put me out of my routine and in a different place at a different time for this to happen.

A Privileged Position

TW: medical treatment for non-gender-binary and trans people, privilege

 

Side note: rumour has it that one no longer needs to provide ID to get codeine, at least until it goes script-only. Small wins are good, right?

 

So all this medical stuff I’m going through lately, and specifically how people seem unable to see ‘me’ in all this, has made me think about how i fit into the whole thing and how trans* and non-binary people get care. My position is that because i am afab (assigned female at birth), and since that’s generally how people assume when they see me, even if i do my makeup and bind and layer specifically for passing (especially now), i don’t really get put in the position of having to ‘convince’ anyone i was afab for things that is necessary for.

And, it is, unfortunately necessary. Because medical experimentation and treatment outlines and pretty much everything is designated male or female, it’s something that sticks with someone even if they surgically transition and live entirely as their preferred gender identity. (It’s very embarrassing to have to approach FtM relatives, for example, to ask if they had endometriosis, just fyi.) So, because i was afab and because i don’t want to permanently alter how i look, i don’t get the ‘but i was afab so you do need to give me a pap smear’ things.

What i also don’t get is valid and appropriate care for things which should not be gendered but are. Half of my heart is enlarged and i have a family history of heart disease (the rocks fall everyone dies kind of history). Because i don’t present male enough, it isn’t being taken seriously. Nobody knows why my heart is enlarged. Nobody thinks it’s worth looking into, no matter how much noise i make over it. Heart disease is a male illness; the warning signs and treatments are all designed for and tested exclusively on men. The fact that my heart isn’t working how it should, because i do not present male, is not important. The fact that i get dizzy if i move too fast, that my right shoulder doesn’t work, that i get chest pains for no reason – these mean nothing.

Well, i am told that the chest pains are just anxiety, because i have a mental health diagnosis, but then if that was the case it wouldn’t happen exclusively when i’m either sitting doing nothing and being very calm, or in the middle of the most strenuous physical activity i can not fail at doing.

 

Because i present female (even when i don’t mean to), doctors treat me as the stereotypical female. Since i have a mental health diagnosis from when i presented as a female under thirty… every physical thing gets written off as stress. i don’t get second opinions. i don’t get the right scans – just the cheapest. i had an echocardiogram after six months of saying ‘this isn’t right’. The cardiologist sent back a report saying it wasn’t concerning. My family history wasn’t passed on to him. i’m sure my file sits next to my dad’s in their file room, but confidentiality means even if someone noticed, they couldn’t use that as a reason to suspect a connection. Another doctor asked why i hadn’t had an ECG or a stress test, until he saw the report. Then, well…

Because people who present female and still count as ‘young’ are still ‘hysterical’ and ‘its just stress’.

 

And this is before the gynaecologist, where suddenly i’m not dysphoric enough to have a procedure i asked for for medical reasons, and i’m meant to wait until i’m older “in case”.

 

My point is, i think, that having any kind of non-binary or trans identity not only blocks people from accessing care due to the attitudes and assumptions of physicians, but even without those, we can never escape our birth identity. It still defines us, for them. We can’t avoid their boxes and the traits that go with them. Some of us have privilege that matches enough to get what we need; some of us do not. Some of us have to apply labels we don’t identify with to get what we need; some of us do not. Some of us can fight for what we need; some of us can’t.

It’s not us that need to change.

Courtesy is dead

This just in: an update to the workmen situation from Monday.

 

So yesterday, I missed my doctor’s appointment to sit at home all day because the neighbour told my mum that they needed to get into the back yard. I need to physically open the gate, which only opens from the inside, and because it shuts on it’s own, I need to do it to let them in, because sensible people generally don’t leave their back gate open for anyone to wander in, especially in an area with kids and bikies (probably the nice ones) and serial breakins in the area.

Nobody came to get me to open the gate. My mum called the neighbour (she does this without consulting me a lot, and then complains that he’s hard to deal with) and he said a time. Nobody came, again, and I explained to my mum, again, that I need to physically open the gate for them.

I saw them leave and nobody told my mum anything, nor did my mum get through to the property manager to confirm anything. We thought they were done, and were generally relieved.

In Which I Don’t Matter

TW: anxiety

 

So I spent most of the day stuck inside my house, crying and terrified.

Why?

Well, I woke up after two hours to a banging outside. I thought it was the next door neighbour, because he works construction and he does that. Except, you know, it didn’t stop. And then it started closer – in front of the door kind of closer. There are two ways out – the front door and the garage, right next to the front door. So I couldn’t leave.

The only way for me to call the police is to get someone to do it for me or use the relay, which, well, means I have to get someone else to do it for me. So I messaged my mum. Who didn’t get back to me for two hours.

 

It turns out that like last time, a bunch of repairmen came and started to work on the house without telling anyone – not the property manager, not the presiding officer, not the landlord, nobody. Last time, it was someone fixing the roof, looking down on me in the shower through the fan cavity. The time before, I had the guy insist on coming in several times and he turned up a few days later asking for my phone number. The time before that, after I had been told they were done, I had someone trying to get in the back door (which is fenced and blocked off by way of two six foot fences and two locks, and the back gate is blocked by my dad’s random handyman whatever). None of these times did anything come of complaining – my landlord (i.e. my mum) said it was too hard and just to deal with it.

 

So today, like, they came, blocked off the exit, and started working on the house, while I was in it, without me knowing. I was terrified. My mum did nothing.

So then she’s like ‘wah I didn’t get your text! but the neighbour wants you to open the gate for them tomorrow!’ And, of course, I’m like ‘no’. Because, you know, if someone wants access to do repairs, they’re meant to give 48 hours notice, and if they don’t, or they can’t get access, they just do what they can without it (as long as they gave notice). At least, so I thought. I had even checked the mailbox over the weekend, and there was no note, nothing. Also, I’m meant to go to the doctors’ tomorrow, oh, and the anitbiotics for the pain I’ve had for over four years because “it might be an infection!!” have given me the flu.

Here’s the thing: I told my mum this and she’s like “well why can’t you go?”

Because, like, someone wants access to the house?

“It’s just the backyard,” with, you know, all Dad’s expensive tools?

“I don’t like being told what to do and I can’t deal with the neighbour, so just do it because otherwise he’ll make trouble.” It’s 2017, we’re past gender minorities having to play nice to satisfy men.

“Okay,” I said. “Who are they and where are they from?”

She didn’t know, and wanted to know why.

“So I can make sure they’re who they say they are.”

Incoherent rage. Because, you know, she’s tired and the weather’s bad and instead of saying no, she went to a funeral or something and she’s tired and she can’t be bothered dealing with the neighbour, who actually has no legal authority to order anyone to let anyone in?

“Mum, are you saying you want me to let people on to your property without knowing who they are, without legal notice, because you can’t deal with the neighbour?”

Yes, she said.

“Even though it’s my safety this affects?”

Yes, she said.

 

Well, I don’t know if I’m the unusual one, but if your mental health is such that you would rather put people in danger because you’re not emotionally capable of caring for yourself enough to handle your responsibilities to your family (ones that people explicitly offered to take over and you rejected because you wanted to keep it)…

 

So then, after crying so much I had to do my makeup again because I turned into a panda face even before it dried, I went to dance.

My knee buckled, once, because I have the flu and I am tired and I wasn’t able to put all my energy into hiding all my body’s little quirks.

“Are you okay?” The teacher, who knows full well that I have a physical, mostly invisible disability, asked, in front of everyone.

“Are you sure?” she said, because I said I was fine.

And this continued for the rest of the lesson. And afterwards. See, a few weeks ago, it was really bright, and I closed my eyes for a second because I’m officially now light sensitive and bright is bad. “Are you okay? Are you sure? You can sit down!” Her mother is a student, and feels like every time the teacher asks if I’m okay, she can get involved too. Then it was “You can sit with me!” Today it was “She’s just sore”.

Not a she.

Not sore.

My body does different things sometimes but it’s normal and fine for me and it’s really rude to constantly bring attention to it. My knee buckles when I walk unless I make a conscious effort to keep it straight. I have to wear a brace so I don’t hunch when I walk. I can’t lift my right arm all the way up, and how far it goes depends on the day. I have a migraine all the time now, because of the Incident (but remember, if you don’t have a period then it’s okay to have a migraine all the time because not having a period makes everything okay! /SARCASM), so I have to function with it. A lot of the time that means resting a ton and barely getting by, but still.

So then like, I was leaving and this started again and I stopped and typed out that I was fine, it was just my disability. And, now, after eight weeks, they wanted to know if I’d be okay getting down the stairs. You know, the ones I’ve been fine with given enough time for all the weeks before this one? Those stairs. I said I was fine. Believe me, please.

 

I’m just done, except now I have to spend all night working in the back yard and I don’t get to sleep until goodness knows when AND I don’t get to go to the doctor to find out why I have the flu.

 

And also, I can’t leave during business hours, so I don’t get to reup my prescription either.

 

But I guess I don’t matter.

 

 

Lack of Lived Experience

TW: medical stuff, ableism, lack of understanding from medical professionals

 

In this post I am going to list things and what people say and try to explain why it’s totally inadequate and ill-informed that they said it. It’s a processing post, because I can’t separate the hurt from anything rational because this all feels so totally irrational to me.

 

You don’t have many pimples anyway, you can just use pimple cream!

People don’t only get pimples on their face. Pimples on the face can be covered with makeup. Judging acne only from what’s on the fact is therefore flawed. I have pimples down my torso to my waist. Some of them form deeply and last for months.

Pimple creams are acidic and generally carry warnings about not coming into contact with clothes. For pimples generally in areas where there are clothes, pimple cream is not an option if one can’t afford new clothes.

The fact that I have pimples again distresses me because it is a symptom of my body not being the way it is in my head – there are not-mine hormones and not-mine shapes. It isn’t compassionate to say ‘but they’ll go away with time’ because that is measured in years, if at all. It isn’t compassionate to say ‘but pimple cream!’ because that expects me to spend money I don’t have and incorporate a daily/twice-daily thing that is focused specifically on this symptom I should not have. Making it a bigger part of life doesn’t make it less distressing.

 

You can have a Mirena! We’ll just knock you out for it.

I said NO to the Mirena. I am here because I had one forced on me and it has screwed up my body and now it’s not mine. Being unconscious for insertion doesn’t change the fact that once one wakes up, it is in there and has a constant presence and greatly unwanted side effects. Being unconscious for a procedure doesn’t take away the before and after. It doesn’t take away the knowledge that strangers are poking in body parts that one pretends aren’t there. You don’t get to be unconscious for the time when you’re preparing for it.

And, since I was very clear about my history and what I wanted and why, suggesting it at all implies that the doctor isn’t paying attention.

 

But it will go away with time, you just have to wait.

Wait how long? With debilitating anxiety? Exactly? Can you put an end date on this? And what am I meant to do in the meantime? See how I’m explaining how this impacts me? And you expect me to live like this because it might go away later?

 

But you haven’t had a period, that’s great!

Yes, I know it works. That’s why I didn’t want it changed in the first place. But it was. And because you’re refusing me a permanent solution, I have to put up with you suggesting constant non-permanent solutions, which do not work for me and you follow up with but I can’t have them yet because I’m too young (what the hell) and you won’t let me type to you. I have to put up with all of the above.

I also have to put up with a permanent migraine and a bunch of side effects which you’re totally minimising. But, you know, sure. Not being able to see and being constantly terrified is great and I can’t think of a reason to justify that even to be sarcastic. But go ahead. Sure.

 

 

We can’t be sure why you want this.

Well, refer me to someone so you can get a report that says so, since you’re quite happily ignoring the one (two) you already have. Also, you’re the one who decided that it was the only way to get it done and hasn’t bothered listening to the whole ‘I am in a lot of pain’ part. And perhaps if you even let me communicate with you, yeah, that would help.