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.