TW: evil doctors, bureaucracy
It is 6:10am and I am awake. I am currently in a phase where if I am awake for two or three hours, I have to go to sleep for four or five hours to recover. I have a cold and I have a migraine and no matter how I lie, what I take, whether I use a heat pack or an ice pack, my back hurts, and the ovarian pain makes me so nauseous that yesterday was the first time I ate a meal in about a week, and it took three hours of throwing up to get some balance afterward. I have been awake since 4am, because if I go to bed between 8pm and 12pm on any given day, I have a nightmare and I wake up at 4am terrified that if I do not get up and get on the first bus, I will get in trouble at the workplace I haven’t been at for three years and two months (+/- 10 days). I have to blink away the aura that is like a film of oil over my eyes, as if my head is coated in a bubble.
I’ve already put it off for a week, for various reasons. Firstly, I had to wait for a medical report, because apparently, they won’t accept an application without medical evidence, even though it’s compulsory for them to send me off to a strange doctor for an IME (independent medical examination). Then I wasn’t capable of collecting the report. Then I had the report and I wasn’t capable of making the trip down to lodge it, because, of course, you can’t apply for disability online. Unemployment? Sure. But to lodge a claim for disability, you have to pull yourself together, drag yourself down to the office, and wait there in a plastic chair (or sofa, because they recently upgraded), for at least an hour, and all for someone to check the form and make sure it’s written legibly and make sure all the attachments are there. This is a practice which disproportionately affects people who are physically impaired because the entire point is that you are applying because you can’t meet the minimum requirements for being able to work. It’s a government organisation. A discrimination claim will not go anywhere, so I’m not wasting spoons on it – if someone would like to, then I’m happy to write an affidavit in support, but I can’t coordinate a claim. (As an aside, the number of people who still call me, even when the reason they want to reach me is that I can’t talk, is really stunning. Then they email me, because they tried to call and I didn’t answer fast enough, and I have a panic attack and cut them off and don’t check my email for weeks, because I cry in case they have written back.)
So today, I’m awake. I ate yesterday (and cried for an hour, because I had my old doctor in my head saying “you’ll feel better if you eat something” because I realised I hadn’t eaten in 30 hours due to being asleep/nauseous and eating actually hurts. People have stopped bugging me about that, finally, because finally someone did a blood test and realised that I was actually capable of maintaining healthy levels of everything, even calcium, but the damage is done. My hair is drying, ready to be braided out of my face for the weekend (because I can’t do my hair every day now, because it’s so exhausting, and not just because I get flashbacks and yet refuse to give in and cut it), and eventually I’ll even open the form and fill it out. I know where the report is so that I can copy it, because I’m not taking the original, so they can’t touch it and make it dirty. I have a special corset set aside for things like this, because it has sleeves so they can’t see the marks where I’ve scratched my arms without realising it. Once I put that on my brain knows I’m doing an uncomfortable medicolegal thing, and everything else shuts down. I have an hour and a half for all this, because the office opens at 8:30am. I will have to either make my wait time longer by not being there first thing, or cut out some things, because it takes me three hours to get ready.
Last time I went in there for a thing related to my disability, it was because Medicare lost it at me and refused to process my benefit statement unless the form was countersigned. I took it in, asked for someone to sign it for me, then had to wait an hour for the Auslan translator to be free. The first thing she said was “I don’t know you, because I know everyone who comes in with speech difficulties.” The second thing was “I’m sorry they made you wait, anyone could have done this.” Then she told me I could be a model, because I looked alternative like her niece, and her niece is a cosplayer. I know this because she went out the back, brought back her personal phone, and showed me photos. She also thought I was in high school. I am 30. So this is not a thing I am looking forward to.
Even though my psychiatrist wrote me a report specifically for this application (he dictated it in front of me, and I was so proud of myself for not crying until I got home), it is compulsory for me to go to an IME. The last time I attended an IME for workers comp, the doctor yelled at me for not talking. He asked me to sign my name and I carefully fingerspelled it and he yelled at me because he knows sign and that wasn’t sign. I started crying, and he said he would write a report that said he couldn’t examine me because my condition made me unable to talk. I was threatened and eventually received a warning from the workers comp people for not participating. I had explained to them that I couldn’t talk and needed someone to come with me, who wasn’t available that day, and tried to reschedule so that I could have someone come with me. I had a medical certificate saying that I couldn’t talk, and I fought with the Ombudsman for over a month before they agreed to try to make workers comp see reason. (“You need to ask them to change it,” they said. When I replied that I had, and they had had all the emails forwarded to them, they admitted to not reading the attachment. By then, though, it wasn’t enough.) It ended up that I had to get a new lawyer (since the last one, when I couldn’t talk, shoved me out of a meeting and agreed to a bunch of stuff I hadn’t been informed of, let alone instructed him on. I complained, and eventually, I was told that the complaint was rejected and nothing would be done.) and that turned out to be two lawyers, because one took all my paperwork, and wouldn’t do anything until he’d read it all, therefore driving up his fees, and then couldn’t actually advise me before the next scheduled IME as a result. I went somewhere else, and that lawyer told me that I should stay on workers comp rather than take a payout, because I would need medical costs paid for. I tried to explain that I was already on a warning because of my medical condition, and that I would need help to deal with them to do that, and I was told it would be too expensive. That’s how I got out.
So having another IME is terrifying to me. They’re supposed to contact me to organise it. That will likely go the same way as my equal opportunity complaint about workers comp did – they cancelled my claim because I didn’t answer my phone (because they never called and never emailed, either), and I didn’t respond to a letter that said “we are getting to your claim and will contact you soon”. Apparently that meant I was supposed to call them.
The last time I was sent off for an independent consult, the doctor was terrible. It was worse than the one above, and the one who kept dragging me in, prescribing me medication that the pharmacist wouldn’t give me because it would kill me, and then yelling at me for not taking it and telling me that she couldn’t do anything if I wouldn’t talk because she needed to hear how I said things in order to evaluate me. (My current psychiatrist can work this out by whether I type LIKE THIS or like dis. Funny that.)
What happened with her is that I took in a list of things carefully formatted the way my psychiatrist (the one who sent me) had said, with when and how and what had been done, and she would read the headings, ask me a lot of questions, and then giggle and say “oh you already wrote that”. She skipped half of it because it was taking too long. Then she asked if I minded if I stripped so she could examine me. When I went to stand, she grabbed my bad arm and started yelling “you’re wobbly, you’re wobbly!”. When I tried to pull away, and I shook my head, she chased me and grabbed my arm again. She ended up frog marching me into the exam room, my bad arm held up and out above my head, a place it normally doesn’t go. She stayed there while I stripped, and then part way through the exam, she left me attached to the blood pressure cuff while she took a personal phone call. It started taking pressure again when she tried to recall the reading, and she started giggling again. This was also on my bad arm, and my hand had gone numb from the pressure. In the exam room, I had no access to anything to type on to talk to her, either, so when she started yelling at me “come on, you can move your leg higher than that” I was shaking my head and crying, and she just kept yelling.
Then, she wouldn’t leave me alone to get dressed. She said I needed help, and I shook my head. She kept saying I had to get dressed, and kept ignoring me saying no. Eventually, I did get my corset, and started re-loosening it. “Oh, you have to loosen it, do you?” she said. Then, while I was adjusting it over my back, she pulled one side out and broke one of the bones. I glared at her until she dropped it, and tried to at least make it wearable so I could get home. She grabbed my hair and pulled it. I glared at her again, and she started yelling again. “Don’t you want to get dressed? I have to help you!! I have to help you!”. I folded the corset and sat on the bed, my back curved, until she gave up and instead frog marched me back to the desk, only in my undershirt. Finally, she left me alone, when she went to arrange an MRI. I was told I had to get dressed “in privacy” while she was gone. Instead, she came back in and watched, and then said “you’re very independent, aren’t you?”
When I complained to my psychiatrist, the entire appointment was spent with him trying to blame me. “So you had trouble walking?” No. I didn’t even get a chance to stand. “But how did you pull away, maybe she didn’t realise?” This is what I did. It’s clear. “But you haven’t cancelled the follow-up appointment, so it mustn’t have been that bad.” No. I’m not going back. The part where I couldn’t cancel the appointment because I started crying when I even thought of going in with a note asking them to cancel it? I ended up using a relay service and then they wanted to reschedule. I said no. That was that. In the next appointment my psychiatrist wanted to know if I was going to do anything about it. I pointed out that I had learned (as above) that complaining only dragged things out, and people never learned unless they were willing to change, anyway. It turned out that she thought this was all totally normal and the appointment had gone well. Because, you know, watching your patients dress and undress and assaulting them in the process is normal.
So I’m not looking forward to any of this. Add to that the possibility that they might force an 18-month employment preparation program on me in order to earn this payment, and mandate medical treatment as a condition, when if someone tells me I have to do something or not get money I start crying (and all the other things), this is all a total mess. And yet, it has to be done, because workers comp messed up my payout, and because they hadn’t repaid Medicare for the medical costs incurred while they were not paying me, and doctors like being paid and won’t wait for workers comp, that got taken out of my payout as well, all resulting in a net loss of $20,000 in taxes and unpaid medicals, and if I do not do this thing, I won’t be able to eat, pay for speech therapy, pay for the neurologist (whom I have to see privately because he only takes public patients at the same time as speech therapy, and when I missed speech therapy because I was in, you know, a car accident, the owner started harassing me on Facebook to pay for it, even though I was told twice that I wouldn’t have to), or pay for whatever other stuff they say I have to do that I really can’t.
If I was able to lodge this online instead of having to go in, it would have been done on Monday. Or Wednesday. But I have to pull my spoons together and go in, and go through a traumatic process just to get it. I don’t know what I will do if I get rejected and have to appeal it – I can’t even watch courtroom dramas without serious comfort accommodations. At least there’s a long weekend so I’m not expected to do anything as I have a few days of blah and get through this fatigue phase. Except I have to get enough medication to last through the weekend, and we know that’s not fun, right?
You know how everyone says talking helps, and then you go ‘but that’s part of the problem’, because talking brings everything up again and it’s retraumatising? That’s how I feel right now. That is another story for another day, though.
As an aside: I highly recommend this article and the links for an explanation of how healthcare and goverment bureaucracy impacts patients beyond costs and stupid rules.