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.

 

Advertisements

I Can’t Even

TW: gender dysphoria, anxiety, ableism, discrimination, mentions of rape/pregnancy, discussion of reproductive organ stuff

 

I just got home from the gynaecologist. I didn’t make it home before spouting into big ugly tears. I didn’t even make it out of the office, though I fought valiantly to keep them just in my eyes.

 

Let’s recap the situation:

I am genderfluid (they/them), asexual, and very not interested in having children. I very dearly above pretty much everything else in life, including singing with Sir Russell and not having to ever talk to my mother again, want a hysterectomy-oophorectomy.

Continue reading I Can’t Even

Things The Internet Says I Have

  • Rheumatic fever
  • Pancreatitis
  • Diabetes
  • Ovarian cancer
  • Liver cancer
  • Inflamed kidneys
  • Hypothyroidism
  • Social dysphoria
  • Rejection-sensitive dysphoria
  • Rheumatoid arthritis
  • Multiple sclerosis
  • Autism (well, I was diagnosed in school, but DECS aren’t great about handing out proof so it goes here and not there)

 

The doctors say “It’s probably neurological,” even though I asked for tests for neurological and auto-immune disorders and was told that because I had seen a neurologist once, they weren’t necessary.

 

And remember, everything can be fixed with physio! Even if you can’t get there and home again. And just because one doctor said something it’s not actually true if it’s not convenient (like how I was diagnosed as allergic to paracetamol, paracetamol makes me throw up and get a fever and prolonged dosing gives me a rash, but because paracetamol comes in stronger doses than ibuprofen…)

/sarcasm

 

Things I have actually been diagnosed with (that other doctors do or do not believe):

 

  • conversion disorder (mutism)
  • PTSD
  • PCOS
  • DSPS
  • sliding hiatal hernia
  • cardiomegaly
  • gender dysphoria
  • scoliosis and spondylosis at T7-8
  • migraines

 

Things I am allergic to (that doctors do or do not believe even though I have documented allergic reactions to all of these):

  • Milk and milk products (inc. lactose, whey)
  • Eggs
  • Beef
  • Chicken
  • Apples
  • Citrus
  • Pumpkin
  • Paracetamol
  • Paroxetine
  • Latex
  • Bee stings
  • Avocado
  • Cashew nuts

This list has actually grown in the last few years, but increasing sensitivity to things that weren’t sensitivities before isn’t actually a symptom of anything or worth looking into.

(also /sarcasm)

 

I don’t know how to make people listen to me. I can’t yell at them. I can’t show much weakness, like bursting into tears, because all that would get me is committed, and the reason I’m not allowed prescription painkillers is apparently “[I] wouldn’t like being committed”, so apparently, that isn’t an option.

(more /sarcasm)

 

Symptoms I have that haven’t been addressed, tested, or looked at:

  • pain on physical activity in both wrists (so like, typing and knitting)
  • pain in both knees
  • sciatica-like/stress fracture-like pain in both lower legs
  • right shoulder weakness with frequent dislocations
  • Lhermitte’s sign in cervical spine
  • skin hypersensitivity
  • white shiny patches on my tongue

 

Symptoms I have that have been looked at but don’t have a cause (and therefore shouldn’t be there or it’s just because of the conversion disorder)

  • repetitive pain under ribs (present with no change after gall bladder removal, i was not given a choice about that or given any assistance about changing my diet, which is fine because i can barely eat anyway) – my ribs actually crunch if i take a deep breath, which is a thing
  • tenderness in lower stomach area (below navel, to the point where I can’t tie a dressing gown, rest anything on my tummy, or wear heavy clothes, or sleep with a doona)
  •  constant, repetitve pain below that on both sides, mirror image (not endometriosis, apparently, because we had that entirely unnecessary procedure), which is worse if I sit, have my right leg anything but straight out, or have to urinate
  • related, urination is either more frequent or significantly difficult, is often red- or green- tinged
  • extreme fatigue (i went to a concert, i sat on the floor, i slept for fourteen hours because i sat on the floor somewhere for a few hours and it made me tired)
  • i’m still losing weight and it’s been four years since the pain started

 

But, you know, not important. It doesn’t matter that the transvaginal ultrasounds and pap smears hurt (they’re not meant to, but I can assure you that they did, and psychologically having someone up in that area was not great either), because the fact that they found nothing means that nothing at all is wrong, because everything can be diagnosed from sticking a wand up a part of anatomy I try very hard to pretend isn’t there. Everything. Ever.I’ve never seen my kidneys on any scan I’ve had, so if something’s wrong with them, well, blah. If the entire inside of my pancreas is a skeletonised black hole of doom, well, we don’t know that either. (I don’t know that it could be, but it hasn’t been shown to be normal). The one blood test I have had in this entire time (I KNOW RIGHT) couldn’t rule out anything but proved that I am actually still capable of feeding myself because despite being, apparently, underweight (because the BMI is everything, as we all know it isn’t), I was completely nourished but could have lupus or arthritis or something. Thyroid issues can affect talking because that’s where the thyroid is, but the test showing altered thyroid-related numbers was, you know, not important. I was promised a further test in twelve weeks to check, but, you know, doctor was on leave again. Or something.

 

Part of my most recent doctor’s visit was sublimated because, after promising that he wouldn’t send a letter to my GP until I had seen and approved it, my GP had a letter from my psychiatrist, and she randomly decided that was more important than listening to me about why I was actually there. She decided that she would get my records and explain things to me better so I understood it. Never mind that the letter says I have things I don’t have (for example, the psychiatrist decided, with no tests, and being a psychiatrist, that I have a duodenum. Everyone has a duodenum, or is supposed to, but him saying I have one means that he tells everyone that I need reflux medication, because he’s a psychiatrist. The reason for my hernia? Throwing up at old-work seven to ten times a day for three months. The reason the weight loss didn’t stop when the throwing up did? No idea.) Never mind I was there to ask for a referral to a new psychiatrist because he was on leave again and I am in crisis and need help now.

 

The point?

 

If I listened to the internet, I would probably have a lot of things I don’t, but I would know what the things I do are.

 

If I listened to my doctors, I would have a few sessions of physio and would magically not have a brain disorder and the pain would be both neurological and not neurological but the physio would have fixed that too, because physio fixes everything.

/sarcasm

 

In other news, the Roman Catholic Church has started releasing and supporting the releasing of articles encouraging acceptance and treatment for gender dysphoria because transitioning, however people choose to do it or not, is part of that individual’s journey to spiritual wholeness.

The Roman Catholic Church is more progressive than what I have for a medical team.

Chew on that. (If they could put out a thing telling people that existing is not consent for them to touch me at Mass, then maybe I’d even go.)

 

 

 

 

 

Emetic Early Warning System

TW: disordered eating, PTSD, conversion disorder, chronic pain, people being sucky, assault and implied assault/battery

 

I don’t know how to condense this into a content warning, so if I have missed anything I need to put in please let me know. I think this post is more me putting my thoughts in order and getting them out of my head so I can move on.

 

So last week I talked about how important routine is and why messing with it can be detrimental, and about subdrop, vaguely. The takeaway was that I was not in an emotional place to be making decisions.

 

So I ended up quitting therapy just after that, didn’t I? Continue reading Emetic Early Warning System

On the safe space debate

TW: triggers, safe space, ptsd, discussion of (discussion of) sexual offences

 

The other day, the safe space debate hit me. I tend to ignore things-on-the-internet, so for it to get to me usually means it’s a huge issue.

 

“I don’t believe in safe space, what do you think?”

 

Huh? This came from the person who saw me having an epic panic attack, complete with crying, panda eyes, and a  distinct lack of coordination, and let me sit in his room so I didn’t have to deal with people.

Continue reading On the safe space debate

my pain is invisible

TW: chronic pain, undertreatment, mistreatment, ableism, disordered eating, dysphoria, mental illness, sucky people about all the above

 

“you’re not sick” he says

“you come here

each week

and sing beautifully”

never mind that

the rest of the time

my brain is too tired

even for words

or letters

even one

 

“if you don’t have it” he says

“you won’t need it

and then you’ll be fine”

because opiates

are only for pain

when its really bad

never mind

that thing that crunches

when i breathe

or the clicking

in my spine

or the constant

strained muscles

from throwing up

or how i can’t

even stand up straight

and my knees don’t

bend like they’re

meant to

 

then there’s the pain

that doesn’t have a sound

or make it harder to move

it’s the knife in my back

in my thoracic spine

between t7 and t8

that didn’t show on the xray

just ‘that’s not significant’

because the disc was

only a little bit out of place

 

it’s the tenderness in my stomach

it was better before they cut it open

just to see

“don’t touch” i say

in my mind

because the teddy bear

understands me

when i hold him

 

it’s the lance in my groin

at least i think

i point to the same place

and they call it different things

“adductor strain”

“referred pain”

“ovarian cysts”

“endometriosis”

and now it’s

“non specific pelvic pain”

they say it’s in my head

that the nerves misfire

because they already took out

my appendix

my gall bladder

and their cuts didn’t heal

but they won’t take out

the other things

a uterus

ovaries

that don’t belong to me

“you might change your mind

if you meet a nice man”

and then what?

will i want the pain?

will i want a body that’s not mine?

just to please

someone who can’t see me?

will i

suddenly not be ace

or childfree

and be unhappy?

 

it’s in my head

but for real

they say that the lesions

mean nothing

and i suppose

that everyone can’t see

their brains don’t hold

words

letters

numbers

and they can’t move their faces

even to pretend

to smile

and their bodies

betray them too

so their doctors can yell

“you’re not trying hard enough”

when they can’t touch their toes

or make their hands meet

 

“your anxiety makes it worse”

“it’s just your ptsd

it will go away

when you’re all better”

is another thing

because having

a mental illness

means i can’t have pain too

or that it’s only because

my brain

sends signals

to the wrong place

and really

my stomach

doesn’t live

in the wrong place

and the pain

that came before

never existed

 

there’s pain in my shoulder too

and my knees

and my ankle and wrist too

on my weak side

from the migraines

it started one day

nobody knows why

i was told to lose weight

but then i was told i was underweight

and probably anorexic

and they only stopped

when my bloodwork showed only

that they couldn’t exclude

arthritis

hyperthyroidism

really it said nothing

other than i was still capable

of feeding myself

 

they don’t see

when i fall over

smash a table

lie in the pieces

waiting for the strength

to crawl back up

and fix it

again

 

they don’t see

when nothing stops it

and the pain keeps me awake

for days

and days

and ice does not numb it

and heat only burns

because it really is that bad

because i can’t even

get up

to do my stretches

and my brain

doesn’t know what they are

 

they don’t see

the circles under my eyes

because i hide them

with enough makeup

that it weighs on my skin

so i know not to cry

or the bruises

because they’re always

in awkward places

and nobody’s looking

 

they don’t see

that i take hours

just to get dressed

because i have to rest

after i do my hair

after i fix my clothes

after i do makeup

and then again

 

they don’t see

how even the shower hurts

the water

sending shocks up my spine

and sounds

that make my skin crawl

or rather

the sounds themselves

on my skin

they don’t understand

when i say

the pain is white

it feels like a thing in me

pushing to get out

 

“just get a taxi” they say

when something’s too far

because i sit

in the waiting room

and in the office

and swallow the pain

and the nausea

so they don’t see

that sitting is what hurts

and taxi drivers

don’t stop every ten minutes

so you can lie on the ground

and put your back

in neutral

and lay out flat

so pulling your legs up

doesn’t hurt

the whatever it is

and don’t forget

that buses

somehow

give you migraines

if you don’t have one

already

that is

 

or they say

“think positive”

or

“my cousin’s cousin did”

and you can’t tell them

that you tried it

years ago

and the other thing

and you’ve been told

there are no more options

other than make do

as you are

you will never be

pain free

again

but don’t take the pills

and physio will fix everything

even autism

because it’s still magic

even though

it didn’t work

and you just

do the exercises

at home

so you can say

they don’t work yet

 

and the chemist

when they refuse to serve you

because the migraine

stops you from writing

because you need

the pills

for the migraine

they say “see a doctor”

because that’s

an original idea

i haven’t tried that

at all

i guess

all these people

are just in my head too

or something

 

my pain

is invisible

but it is there

and i am doing

the best that

i know

how

Updates

#censusfail

So, I went to a movie on Saturday. It took me four hours to get ready.That’s four entire hours, not three hours with a rest every hour. I dragged myself there, dressed up for the occasion, and a guy seven or so seats away waved at me and kept giving me the thumbs up.

I think, perhaps, he recognised that I worked very hard to attend in cosplay, or just that he recognised my moogle.

I got home and found the door jammed closed with a piece of paper. The piece of paper was a passive-aggressive note from a census collector named Colin. Colin had decided, since the ABS won’t allow me access to the alternate survey for people who don’t use ‘male’ and ‘female’, to shove a paper form in my smaller-than-regulation mailbox, with the weekend’s catalogues. I spent twenty minutes tearing it to pieces from both sides in order to get it out, and there are bits still in there. I ended up having to get food delivered, because my hands hadn’t recovered enough for me to make my own.

The note also said he’s coming back.

Somehow, I don’t feel safe knowing that.

 

No means NO

I suppose people don’t read, or assume that all phones have speech-to-text functionality. I could swear I remember the psychiatrist saying he would hold the referral. Instead, the other doctor’s office has picked up leaving me messages again. It’s not happening, people. Respect that.

 

 

There’s a theme coming out, of a lack of respect.

A while ago, I attended a show. It was the first one since the disaster last time, and naturally, it ended up turning out badly. They started breaking the stage down early, because security harassed everyone out – me, specifically. The man came and stood over me, ignoring that I was clearly preparing to leave by putting my knitting in my bag, picking up my keys, confirming I had all my things. He was so close that I could not see his face, or stand without bumping into him. He made a big gesture for me to leave, and I just put my head down, thought you will not rush me, and kept going. Then he leaned in further and started waving his hand in my face. I prayed for him to leave, and he did. I pushed myself up on the wall and then had to walk out unaided, because they’d already started shutting the doors to the band area, including the one nearest me, which if it was open would have allowed me to lean on the wall the entire way out. Instead, he followed me – to the point where my friend noticed something was wrong.

When I complained about this, the venue manager apologised, admitted that they had broken down the stage early, were very sorry etc.

The security company decided to insinuate that I was intoxicated and that if I wanted to be treated politely, then I should carry a card explaining my condition. As if, you know, you have to be less than perfectly abled to deserve the basic human courtesy of having more than two minutes to leave a venue, and as if signing to the man in question on the way in and limping rather obviously is not enough for them. I know this, because I had my phone out and was able to timestamp everything. Two minutes after the final note, he was waving his hand in my face. Six minutes after, I was on the steps outside, and my friend was standing there, not sure what to do because he hadn’t seen the initial incident, what with the door closed.

 

The venue generally closes half an hour after a show, apparently. …

 

I’m actually incensed by the notion that in order to be treated with basic courtesy, I have to explain and justify my condition. “I can’t talk, ringing you isn’t possible, please send a code,” to the ABS. “No, I do not trust that doctor,” to my psychiatrist, who’s sitting there telling me it has to be my choice and I have to feel safe and ready to take any steps, at the same time as he’s trying to push schema therapy on me, as if he’s unaware that I have to cope with intense dysphoria on top of everything else and I literally do not have the brain room to cope with anything else, especially something as radically holistic and intense (and expensive!) as schema therapy. Especially when, until now, he’s accepted that I’m doing everything on my own anyway and my brain just needs time. He apparently thinks I’ll magically change my mind if he has everyone bug me about it, and just keeps repeating himself.

And, you know, being able to stand up and leave a venue without being harassed.

 

I didn’t sleep, because I have to go back there tomorrow. I have to be prepared for the whole thing and everything that might or will or may possibly go wrong.

I am choosing to ignore this doctor thing. I’m not going there – I can’t get there by public transport, and it’s too far for me to drive. My parents are not an option, obviously, and I have a list of bad-taxi-driver stories almost as long as my contribution to the dub-con-is-rape solidarity postings going on now. (And, trust me, as an ace, autistic, conversion disorder, genderfluid, afab, person who doesn’t like labels, I have a lot.) I paid too much to skip the show, so I’m going, and then I am not returning to that venue, free tickets be damned (they’re closing soon, anyway, so it’s an empty threat, really). And if I am not allowed to fill out the census because they won’t give me access to the correct survey, well, I do believe that I can appeal the fine, though that’s time and energy for a small outcome, and I just have to pray that the census collector comes at a time I’m not home.