…Diagnosis… again…

CN: medical stuff, discrimination

 

Today I meant to come home from the doctors and explain exactly how the change in schedule for codeine has only made things worse not better. I was going to talk about how all these extra trips to the doctor mean I don’t have spoons to go food shopping, how the anxiety about going to the doctor and the chemist and whether I’ll be able to get my dose and how I’ll be treated is amplified (even after the police incident, yes, it can and did get worse).

 

Instead the doctor came to collect me early and started talking about the possibility of autoimmune disorders and rare genetic diseases and admitted that he expected to write me a mental health plan and pack me off to the psychologist but instead he’s so stunned that he found something that has a name that I shouldn’t have false hope but I need to do my third round of blood tests in four weeks as soon as possible because if he can’t confirm the diagnosis I might die because it’s gone untreated for so long.

 

And I’m really not thinking anything other than nothing and the occasional ‘I’ve heard this before… haven’t I?’ Because I can tell you right now, since this is my eighth GP in like… five years, that saying the schedule change was meant to push people like me to get proper treatment is absolute bullshit. Since the schedule change I have literally been fired by one GP because I stood up to him and insisted it wasn’t psychological and that he needed to treat me like a person not a stereotype, and before that I was routinely and repeatedly dismissed, told I was making it up, told it would go away if I ate more/drank more/took the piercings out/had schema therapy/saw a speech therapist/saw another psychologist/etc. I would have made it to this doctor eventually, or another one who listened, whether the schedule changed or not. But a doctor listening to me, taking the time to actually run tests and check out my symptoms, is not something that happened because codeine is harder to get. It didn’t happen earlier because doctors and specialists assumed that because I looked female and had a rare symptom that it must be psychiatric, and didn’t look. And that not looking has permanently compromised my ability to have an unimpeded quality of life, and that also has nothing to do with whether I can access the tools to manage my symptoms on my own or not.

 

With conversion disorder, the diagnostic standard is to have had between 2 and 10 negative results for other things that are frequently misdiagnosed as conversion disorder (e.g. MS, Meniere’s, lupus). I had a WorkCover claim.

 

There is no way for me to sue the doctors who did this to me. I would, if I knew I could – if I didn’t know it often took seven-ten years, involved medical panels and extra testing and more money put in than coming out. But even if this next round of tests is a red herring, the fact that something was found, that something that has a name and diagnostic criteria that fit me was never looked for or considered, is something that I would hope haunts them, in some dark dull way that means they never, ever, let someone else go untreated.

 

And yes, this whole process has been far more stressful than it should have been.

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SMR… again

CN: medical stuff, conversion disorder, mental health, codeine drama

 

So last week I walked out of the doctor, secure in the knowledge that I had a backup plan.

 

Well, my backup plan just went kaput.

Continue reading SMR… again

The Little Things

TW: discussion of weight/perception of weight (including numbers), ableism, discrimination

 

This post is going to be a mess because I have a lot to be annoyed about today.

 

 

 

I have a new pet peeve – it’s not a new thing that annoys me, but it escalated to an official peeve today.

Continue reading The Little Things

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

I Am Not Your Pony

TW: discussion of inspiration porn, ableism and discrimination

So it is true that sometimes, people who have disabilities have to work harder to get the same result as a person without them. It is also true that some people credit this as ‘inspirational’.This is called ‘inspiration porn’ and it is bad.

It devalues people and their disabilities by reducing them to motivation for non-disabled people by saying ‘well you don’t have to work as hard so you can be normal too!’.

It enforces the nonsensical idea that disabilities mean people can do less, and that therefore doing normal things is something that should be praised and celebrated as an achievement.

It propagates the assumption that the having of a disability means life is terrible by default and it takes extra special courage to exist.

It reduces disabled people to a stereotype, assuming things like:

  • all disabled people, no matter what their body will or will not allow them to do, have to work extra hard to do normal things (i.e. that doing ‘normal things’ is not actually their usual state);
  • all disabled people are special sainted angels who regularly overcome mental illness just to exist;
  • all disabled people have to fight or overcome their disability in order to be in society, because disabled people are ‘other’;
  • all disabled people have sunshine and rainbows for breakfast;
  • it shifts the blame for anything which can’t be solved by optimism and effort onto the disabled person – “You can’t do stairs! There’s no lift! But you can walk sometimes, right, so just work hard and you can do it! See, you did it! You’re so brave! What do you mean, call am ambulance? We just got here and I’m so proud of you!”

 

It assumes that the state of having a disability is a negative, undesirable thing that people who live with it must be special just because they do, and that by ‘choosing’ to appear normal they should be praised for conforming anyway.

Continue reading I Am Not Your Pony

Tech let me down!

TW: disability discrimination, mention of miscarriage and the trigger warning debate

So I have a story to tell you. It starts with my computer blowing up on New Years Eve, and will end in a few days when my new computer is set up and accessibility-modded. In the middle, we have people treating me like I am stupid (either because of my brain not making words, or because I’m currently unable to pass as anything but female), and we have being banned from Officeworks by virtue of being unable to talk.

 

Yep.

 

 

Continue reading Tech let me down!

Yes, I know myself, thanks…

TW: mention of domestic abuse, mental health issues

 

I have always had trouble with talking.

 

The first time I remember it was before I was in school. I was in the driveway of my aunt’s house, which I loved to play in because it was wide enough for two cars and had gravel. My cousin (ten years older than me) was watching me, I guess. I didn’t know her that well, because she was in high school and I wasn’t even in kindy. The next door neighbour, a good friend of my grandmother’s and a second parent to my mother, came out to say hello and give us food. (This was totally okay in the 80s, by the way.) She was talking to us. It was still at the point where everyone was introduced every time, in the “look how you’ve grown, I haven’t seen you since a month ago! do you remember me!” way that people treat kids, and I couldn’t say hello back to her.

“She’s shy,” my cousin said.

 

The next time I clearly remember was in third grade. We were all allowed to play on the upper school playground as long as we didn’t go on the flying fox until the teacher came back. Everyone had lined up for the flying fox anyway, and I got caught up in the crowd because of the number of people. I didn’t want to go on, and the person in line behind me pushed me. I landed on my arm, burst into tears from shock, and of course everyone ran for the teacher. Rather than everyone else being in trouble for playing on the flying fox without supervision, I got carried away, even though I kept trying to say no, don’t touch me. No, I’m fine. No, please don’t call my dad away from work. I don’t want to go near the oak tree because we pretend that it is a moon base where the monsters come from.

They called my dad, he grabbed the van from work and took me to the doctors, who said I was fine but don’t bother going back to school anyway. (Funnily enough, my dad ended up losing that job very soon after, thanks school!)

 

My parents both trained as teachers and swear if they had noticed anything they would have raised hell to get me help.

 

I became very good at hiding it. I did all the debating and public speaking contests, I was great at oral presentations, until they told us we weren’t allowed to have all the words on our notecards.

 

The next time it became a thing I didn’t have under control was when I was nineteen, and stuck in an abusive relationship. He used to push me to the point where I couldn’t talk or move and then take photos, moving me around, and I’m sure you can imagine the rest. He liked it because he said he thought I was smarter when I “came back”. He also “encouraged” me to take various medications. (Basically, the only way I managed to get out of this was ending up in hospital and then he was angry I didn’t answer his texts while I was having my appendix cut out.)

 

I was in hospital for it once. I tripped on the stairs and sat down to make sure I hadn’t dropped anything and that my ankle was okay, because I felt it twitch. The next thing that happened was a crowd of people around me, someone took my bear away, and another person was shoving his hand in my mouth. I went with the ambulance to get away, and when I got to the hospital I said I was fine and I had to go to work. Against my wishes and without my knowledge, they found out where I worked, called them, and even when I got out because “it’s not a seizure, we don’t know, but she doesn’t want to be here so”, I wasn’t allowed to go to work that day. As a casual at the time, that meant I lost money, basically because people wouldn’t leave me alone.

 

When it started happening at work and I tried to get help, I wasn’t believed because my coping strategies were that good they didn’t have any evidence until I was forced into a return to work meeting and couldn’t make sound. I was shoved out of the room and they conducted the entire meeting without me, and my lawyer agreed to a bunch of things I literally had no idea about. (Naturally, when I complained, they dragged it out so long he got away with acting without advice – because he said he was doing it for free as a favour, despite his absolute insistence on attending. Lawyers. I know. I quit, remember?) Even then, with people actually witnessing it and a medical certificate clearly stating ‘cannot talk’, WorkCover flat out refused to believe it.

 

And now it’s my normal.

 

I am the only person who is okay with this. I have a name for it – functional conversion disorder (mutism). It’s the same reason I’m more often than not uncoordinated, and it takes me a while to learn things. It has a name. It’s a part of me. I’ve had all this time to get used to it. Sure, going from sometimes-and-under-stress to all-the-time is a massive adjustment. People don’t accept this, a lot.

 

Yesterday I picked up a box of Christmas cakes, so I could have a strawberry vanilla cheesecake for Christmas which I didn’t have to make. There was a note on the list, coloured in orange, to say ‘speech disorder’. I had taken a note, I signed to the lady, it was fine. My credit card had two days where the bank wouldn’t accept new transactions, and in that time a direct debit was rejected, so I received a letter to ring them to arrange alternate payment. I wrote back and said ‘look, I can’t talk, is it okay if you just run it again for now?’. They put a note on my account and it’s now gone through.

 

That means a lot, but it’s not enough. Yesterday I went to a shop in Rundle Mall that sells organic fair trade makeup and soap and so on, with the hand picked beans from random South American countries so rich people can feel good about supporting underprivileged people they don’t have to see. I had a mental list – thing for cousin, thing for mum, thing for me. (They have this body butter whip which is amazing for dry and/or scaly skin and it’s the only reason I go there. It’s also $20 for a 200ml bottle that goes hard and stops pumping when about 2/3 is left. Obviously, I can’t afford to use it all the time, but once a week, the itching stops.) I had thing for cousin and thing for mum in my arms. A lady came up behind me. “Do you like strawberry?” I think she said.

She was very clear and loud when she said “Fine, if you’re not going to talk to me I won’t help you.” Never mind that she was behind me, hadn’t actually offered help, and I was clearly able to get what I wanted since my arms were full. I also had my mp3 player on, because Rundle Mall turns into a Gladiator-style crowd scene in December, meaning she should have been able to see headphones in and infer a lack of willingness to be engaged. At the counter, because at the same time as I can’t use the butter whip all the time, I can’t never use it, I was able to complete the transaction through signing.

 

That’s just how it is.

 

The thing is, a lot of people think if the anxiety goes away, this will also magically go away. (Often there’s physio involved, because physio cures everything, apparently.) I usually don’t get to the point where I consider myself anxious. It’s for all effects and purposes, controlled. This also predates every identified PTSD root.

It is a part of me. It is a thing I have always dealt with. I still feel like I’m the only one who actually gets that it’s not going away, not with physio or speech therapy or singing or targeted PTSD therapy or proper pain relief.  And that is okay.