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.