Disability, woo! pt 3

TW: reproductive medical stuffs, depression, anxiety, bureaucracy, suicidal ideation, rape, asexuality/genderfluid/trans* issues, eating disorders

Previous: Disability, woo!Disability, woo! pt 2

 

I have, this entire time, been denying being depressed. I wasn’t. My brain shut down and routes things the wrong way. Technically, it’s not possible to be clinically depressed with my disorder presenting the way it is.

The Mirena came out, and within a week, I was bleeding. (Yes, I know, it’s not blood, but it not being blood is worse, okay?). For two weeks, I have been avoiding going to the toilet because I see a pad and I cry. I also cannot throw out any rubbish from the bathroom because I am missing a necklace and if I throw anything out I might throw out the necklace. It’s not a great combination, as you can imagined. Initially, the Mirena was meant to stay in longer, but it was affecting me so much that was impossible, and now here I am, with a two-week long period after not having one for nearly six years. I thought I would be suicidal. I prepared for that. Instead, it’s something much more insidious – something that very much resembles depression, but isn’t. It’s a combination of dysphoria and dissociation that very much resembles how I was when I left work in the first place, but now with bonus not talking and random times where I can’t walk. (When I left work, see, it was just during panic attacks. It was dealing with workers comp, and my former supervisor harassing me outside work, that sent it to how it is now. All this at the same time as coordinating my brother’s wedding. How half my family doesn’t know I’m sick is amazing, really. They are exceptionally clueless, but still.) The whole point is that emotions are sent into the communication part of the brain, so I don’t feel them. Before, it just meant that my brain shut down for everything, and they thought it was anxiety and wondered why the meds didn’t work (I tried one of every class. I have a list of “unusual” side effects that are mostly because these things are meant for things I don’t have. Like how the migraine medication gave me migraines because my migraines are hemiplegic and it was not formulated for hemiplegic migraines. “Finish the script, they’ll start working,” the doctor said. Yeah, they did not. I went through six months of triptans in four weeks.) This is because, over time, and with everything I have had to do, I have transitioned. It is no longer acute conversion disorder, in that it’s a thing that presents under certain conditions for a short time and then stops. It is functional conversion disorder. It is there all the time and a thing I function through. It’s not going away. All the things are going through the wrong parts of the brain – the stress, the tears, the angst – and affecting my communication and movement. It’s not a snap decision, an overwhelming need or a sudden feeling of helplessness.

No, this is planned. This is logic, somewhere that isn’t meant to be logical,  and it says that if the bleeding doesn’t stop by Tuesday, and if moving around makes it worse when I go to speech therapy, then it’s Plan A. If it actually stops, instead of being infrequent and unpredictable, then it’s Plan B. These are plans that hang around half-formed, and get put off by “I am going to a meet and greet in August so I can’t kill myself until after.” Except, that doesn’t matter, because now there’s a thing. All those stories about artists pointing out people who are using their phones, or not paying enough attention, that’s been me in the small seat. Plan A looks a lot better than putting it off in favour of abject humiliation by a stranger, for which I am trading food money. This is ‘remember when you went to meet Adam Lambert, because if you bought a photo op you got early access to merchandise, but you didn’t get early access to merchandise, some lady in the line decided you were deaf and took over and signed for you until you signed back with the middle finger, and then the organiser gave you special attention and explained to Adam that you couldn’t talk because you were deaf so it didn’t matter that you practiced so much because you were so humiliated that nothing would have come out and you had to run away because he said you looked beautiful after everyone had been telling you off for wearing a corset and trying to play with your hair, then you had to wait in the crowd for merchandise, and because you asked about seating you got stuck in the disability section and couldn’t dance and people kept pushing you because they couldn’t see and they thought that was justification for patting you and pushing you; that will happen again, so don’t wait for it’.

 

Plan B is longer-term, of course, dependent on another outcome.

Plan B is if I do not get disability.

 

When I was preparing my application, I added my voice to a group of people discontent with the application process – the length of time, general inaccessibility, lack of updates. Except some lady picked up on mine, and amplified it, so I was asked to provide my feedback directly up the chain. By this time, I had been forced onto unemployment as an “interim payment”, meaning that every second Thursday morning at 12:01, I have to log in, and spent upwards of two hours reporting my income. I am not allowed to work. I have no income. If I do not log in, because I am asleep, because I have a migraine and can’t see, if my hands don’t work, I do not get my payment. This means this is a source of anxiety, and it is a trigger, because the concept is “but you have to or you won’t get paid!”, and that is what people told me, over and over, when I told them I was being harassed and bullied and asked for help to get out. The first time, it didn’t work. The page kept disappearing, and I tried another browser, another computer, and when it finally came back I pressed the button and cried myself to sleep, then slept for ten hours. Of course, there are no problems with the website, and if you go in, they just make you do it there, with a person standing over you to talk you through it, because clearly everyone is three years old. The second time, it wouldn’t let me fill it out properly, meaning I had to lie to get them to accept it, like how I had to lie about all the work I was doing illegally, because it was, you know, illegal, and if I told I would be in trouble. (To this day, I don’t think anyone knows how much I did that I wasn’t supposed to.) I sandwiched it with a bunch of other unpleasant things, but this dissociative fugue thing had already started, so all I got was a headache, and tears, and wondering why it wouldn’t just let me click the button. My psychiatrist was very explicit with me – he does not want me on unemployment, because I can’t cope with the requirements and that will make things worse, not better, not the same. Obviously, dealing with it is part of how this is happening now.

So, when I gave my feedback (in an email, so it was not exactly easy. I do email once every couple of days, and sometimes I just mark everything as read so there are no notifications but I don’t read them, because I can’t), I was as clear as I could about how each part of the process affected me. One thing that I mentioned was the scheduling of a mandatory medical assessment. When I walked my application in (the only way to lodge it, of course), the lady I saw tried to make the appointment for me, and she was not allowed. I received a letter, eventually, four days after it was generated. My appointment had been scheduled in the morning. I have DSPS. I also can’t sleep at night, because invariably, I wake up before 4am, and I can’t get back to sleep, because I have to be awake for the alarm because if I am not at work by 6am I will be in trouble because the office won’t be set up for the day. To get enough sleep, I have to go to bed after 6am, or it has to be one of those days where I sleep all the time. Morning appointments mean no sleep at all for an entire day – I will get up at 12pm the day before, and not go to sleep until 6am the day after. This is why the lady took down that I need afternoon appointments, and not on the same day as speech therapy, because that is also impossible because of the time I need to prepare.

I explained that, and pointed out that the short notice (compounded by the digital copy taking four days to arrive) made it hard to arrange a support person as well.

Among the other things I was told (we don’t do email because it’s not private, so you have to involve total strangers because we say on our website that you can use the relay to call us!), they said they could reschedule the appointment, and had an entire paragraph warning about how if you do not attend this appointment it will delay the processing of your claimI wrote back, because that is what they said to do (and email is exposure therapy, and I’m trying really hard, but it will always be a sometimes thing), and I was slightly sarcastic, and said that I would prefer it rescheduled so that I could actually be conscious while attending, and these are the times I gave the lady.

A paper notice of the original appointment arrived the day after, so I spent the weekend wondering whether I was meant to go or not. As it turned out, I wasn’t able to, because my brain broke down under the strain and then I started bleeding. So.

I received three days notice of the new appointment. It was at the same time as the second followup with the gynaecologist, the one I’d been trying to cancel anyway, only to find that their office was locked during business hours (so I couldn’t deliver a note), and they didn’t have email (what?). I managed to cancel it by having someone call for me, and the receptionist actually thought she was me, even with the whole not-able-to-talk part. But it was cancelled, and not rescheduled, so that was that.

The only reason I slept on the day was because my sleep schedule got out of whack while adjusting to attend the morning appointment, and with the Mirena coming out and the period, I was back to not being able to keep down food over the weekend and ended up with five days in a row of 18 hours of sleep. When I woke up, I knew what day it was and started shaking. I spent an hour on simple makeup, because makeup applied in a sufficient layer makes it so that I cannot cry in public unless it’s really bad (like, say, bumping into the man responsible for the concussion that exacerbated this in the first place, or being assaulted for ‘looking nice I just had to tell you’ bad). I was prepared, damnit, and I was going to make the best case possible. There was a lady casing my house from her BMW as I left, but she had gone when I went around the block, so I’m not sure if she was watching me because she was waiting for someone, or was looking at the house for sale next door and ashamed to be caught, or something. It threw me. I got my meds, I got my mail, I checked that the lady hadn’t come back or broken into the house, hugged my teddy again for good luck, and went.

I found a park all the way on the other side of the shops, very easily for a weekday during school holidays, and I was able to duck in and get a drink before heading over to the government office and getting in line. It was 1:50pm, and my appointment was at 2pm.

The first sign that it wasn’t going to go well was when it was my turn at triage. See, even though I had an appointment, I had to wait in line, and get it entered in to the computer that I had arrived. Armed with a note with my ID number and the reason and time of the appointment, I was ready to combat the snatching-form-out-of-hands, I-can’t-understand-you-that’s-not-a-real-number-this-isn’t-you, and sit-down-until-the-Auslan-interpreter-is-free. Instead, she thanked me, and shoved my note back in my hands. It was entirely unnecessary, of course, and entirely ignorant of how I don’t like things being handed to me, and I can’t touch other people. I wouldn’t need it again, anyway.

There was a man in the same waiting area as me. He was swearing into his phone, so I put my headphones in both ears. I’d seen the room being prepared while I was in line, and while my suspicions were largely confirmed, I still had hope that I was wrong. After all, I was meant to see an independent medical professional, to be assessed as to whether they agreed with my doctors that I am unable to work the amount of hours stated as the threshold for qualifying for disability. I’d noticed, that morning, when writing my note, that the type of appointment had changed – I thought it was a mistake, because it’s a mandatory part of the application process, and very specific. But the employee, with his nametag and all his papers, was calling my surname when I saw him walking to the waiting area. So, not exactly a medical professional. He didn’t introduce himself as one, either, and he even had a name on the desk.

“My job today is to make sense of all this and write a report that makes sense for the person who has your claim and decides it,” he said, eventually. Nothing about being a psychologist, or a counsellor, or anything.

I was suspicious, and I was right, and I felt endangered. That’s a hard thing to describe, how it feels to be genderfluid, with a cismale twice your age holding power over you and your future, looking around. “I thought you’d have someone with you,” was the first thing he’d said. “You should really have a nominee.”

He decided he would only ask yes/no questions and he gave me a little notepad and a pen to write on. I was wearing makeup, so I couldn’t cry. I have no friends, no local family. Who I am going to ask to advocate for me who isn’t going to treat me the same way as he was? He had written Miss on the medical authority, clearly ignoring my preferred pronoun on the form, Mx. I like Mx, because I get laughed at if people use Mr, and Miss/Ms have sexual connotations around their femininity. It was hard enough to sign the damn thing – to write, I have to use my non-dominant hand, position the pen, make a fist, and scrawl as best I can, so my usual thing of crossing it out I deemed too much trouble, and because he wouldn’t let me type to him, explaining that I am not a girl would have been impossible.

He realised writing was impossible when he ignored me signing the numbers to him and insisted I write down how many times I had seen my psychiatrist. “SI”, it looked like, after a minute of arranging the pen. “Fifteen?” he said, squinting. It was fifteen after that, even after a look at my forms indicated that my writing, even when I’m biting my piercings and taking my time, with a big thick pen that doesnt hurt so much, comes out backwards and not very neat. “Twelve! So he knows you, then.” (This has progressed, by the way. When I had turned off my computer and realised I forgot to put some things in my private journal, I tried to write them down. Entire words now come out backwards, not just letters, and it’s not consistently so.) Writing anything in front of people is humiliating for me. I type to my psychiatrist, and he keeps what I write on file, because that’s useful to him, and he tells everyone he refers me to that that is best. It was even in the report. But, you know, typing to this guy was impossible, even though I brought my own to use.

Apparently, so was asking yes/no questions. Despite asking about my workers’ comp claim, which they were already informed of, he wanted to know how I had been surviving without welfare. “Savings?” “Your parents?” “What then?” I tried to type, and he told me off. “I don’t need a complex answer, it’s not relevant anyway.”

He was weirdly obsessed with something from a previous assessment – that I used to do cryptic crosswords. Obviously, this is impossible now – I can’t do paper ones. He couldn’t get that. Then he asked if I could read – something I had said in my statement of how my condition prevents me from working. I can’t understand things when I read them. If I read this back, I would not understand a thing that I’d written, and I’d be struggling to summarise it, let alone reconcile a fact from the top of the page to something here, halfway down. Typing these entries takes hours, sometimes even a couple of days, and then I have to correct my words and grammar before posting, because letters get mixed up, my hand can’t manage making capitals because it requires two buttons, and I ramble because I can’t remember what I just wrote. But! He asked if I could read, and then decided that my migraines prevent me from doing so. Not, you know, my brain being wired the way it is.

He wanted to know if I had any physical disabilities. “Do you have anything else?” is how he phrased it. Bear in mind, anything other than the reason on the claim form and in the report from my psychiatrist cannot be taken into account in the decision. It doesn’t matter that I drove there, indicating that I can drive (even though I probably shouldn’t, and the only reason I do is that public transport is inaccessible to me, as the train station is too far to walk to since the operation, and buses give me migraines), or that I do my own shopping (online or at quiet times, where they have self-checkout or the people know me. At my nearest Foodland, there is one girl who always clocks on to check me out if she is there, because she realised I can’t talk when I was searching for my missing binding ring, and now she actively makes sure I get what I need. I appreciate it, because everyone pretends she doesn’t do it, and no attention is drawn to me in the process. She even avoids doing things like loading six bottles of Coke and four boxes of icecream in the one bag. I may be a dancer but I’m not a weightlifter, and I can only carry so much on one arm…), or that I don’t dance at that school any more (because instead of fixing their shit, they told me it was my fault I was being bullied for not talking and needing a corset, because I don’t work hard enough to be nice, and it’s not their responsibility to provide a safe class environment because people should stand up to bullies and that will fix it). He already knew about the migraines, because there’s no hiding from stuff they already know, although he only had one old assessment there, and not my previous ones. I managed to point to my back, but while I was deciding how or whether I should point to my tummy or between my legs, or if I even felt safe doing that in a room with a cisman with the door closed… he moved on.

When he wanted to know if I had a GP, I was able to say yes, because I finally do. Except she doesn’t know about any of this, because my psychiatrist is away and I gave up trying to explain because there are many things I do not actually know, or understand. (For example: how did a slipped disc disappear in 18 months? Can a corset really fix that? Because, if it did, I’m definitely converting to 24/7 and waist training, and everyone who tells me off for ruining my back can be told to go jump with an expressive glare and no further contact.) He wanted to know who she was, and wanted me to write it. I typed it out, though, and he was like “oh! you have it in your phone?”

Then he tried to take my phone from me. I pulled it back, and he pulled again. “I need to write it down!” he said.

When he finally let go, I wiped it with a tissue. “You don’t like germs?” he said. “That’s important, too.” He wrote that in the top corner of his cover sheet. No apology, of course, not even to have a pretence at making the rest of the appointment palatable.

Then he told me I wouldn’t be able to get my payments because my disability would prevent me from meeting the obligations required to receive them. He reached over my head, trapping me in the chair, because he wanted me to sign up for a mentor at a church program, not my church, a program I know is underfunded and filled with people who are not capable of helping me, because I used to handle their stuff for them when they couldn’t. When I typed to him that i cant deal with more people right now he started yelling. “It’s just for later! You have to make your GP refer you!” I was impassive. I ignored him. I left.

I am also not meant to deal with new people without my psychiatrist’s assistance and approval – the new GP was a special case, because I could not wait another month with the Mirena, and I had to fight so hard for that it exhausted me. (Stress can cause periods. No wonder it’s not stopping.) I went to her with a letter, and I gave her my psychiatrist’s name and number, and authorised her to talk to him for anything else. I couldn’t take a letter to this appointment, because I had no idea what I needed to convey, and I had already said the important things. I was very lucky with the GP, a combination of praying really hard, being absolutely desperate, and asking the Internet for help. (The internet tells me, also, that as genderfluid and asexual, I qualify as trans*. I don’t know what to think about that at all. I just want that stuff inside me gone so I know that when there is pain it is not to do with a thing I do not have. Try explaining that with yes and no. Apparently this is why American people don’t like putting A in GLBTQIA, because asexuals aren’t minorities who are oppressed, and everyone fits under another letter. Having been subject to rape explicitly because I said “I do not want it, I do not like it, my brain doesn’t react in a pleasurable way and it makes me feel uncomfortable” and being told I just hadn’t been trained right yet… I beg to differ. See how I ramble.)  But I will be unpacking that as soon as my psychiatrist is back because, again, depressive dissociation thing. I’m even back to the bad way of eating, stuffing myself when I’m not hungry with things I react badly to, expressly so that I can throw up and say I’m sick so I can’t do things, hoping to get out of whatever comes next. I don’t even know what the name for that is. Since I had the period-throwing-up last weekend, I have only had vegan schnitzel sandwiches, packed full of nasty nasty gluten and that thing that isn’t chia and probably begins with f. In fact, I went from the appointment to the supermarket, spent money I don’t have on more schnitzels, and today I made myself throw up because there are bits in them that look like when you get a vein in steak, and the texture of those makes me throw up. Nobody believes me when I tell them I don’t weigh myself because I know it would become an issue, because the 25kg weight loss is meant to have stabilised (it hasn’t) and “if you just eat more you’ll be fine” which is now a trigger, and “but you don’t have any history of eating issues” despite repeatedly fighting referrals for anorexia because the weight loss is because it hurts to eat and being super careful about sticking to safe foods except, when, you know, not. I wonder if that was important for him to know, too. He didn’t ask. I couldn’t yes or no that, either.

 

I kept my sunglasses on in the appointment. This is a strategy, because their lights are fluorescent and blink a lot, and they hurt. It also is an indicator for me, because I dragged myself to my previous reproductive health person with them on, and she told me to take them off, and proceeded to tell me my migraines weren’t real, even though she’d previously happily recognised them as a sign that I needed to not be on tricyclic pills. He asked me if I kept them on at night and how I saw to drive. I pointed to the light. LED headlights are worse than fluoros. I have my car windows tinted to the max, maximum rated sunglasses, and it’s not enough. However, this is also not relevant, because while my psychiatric condition is related to migraines and headaches and brain fog, that is only one kind of migraine. The most troublesome kind is one I do not understand, the one on the right that feels like a stabbing pain, comes on without warning, and then just sits there like a hole above my eye. That’s the one that came with the words going, until that became permanent. Apparently, developing lesions in certain parts of my brain, ones that weren’t there after the concussion that sent my hormonal migraines from annoying to debilitating and come with stabbing from the back of my head, have nothing to do with that. Perhaps that’s why the neurologist won’t let me make an appointment to see him. My hormonal migraines, really bad at the moment because that’s how they work, are not psychiatric. Also, not relevant.

 

I was so exhausted when I finally got home and I wished I could cry. I wiped down my phone with antibacterial wipes, but it’s not enough. It’s still dirty, and if I touch it I remember him pulling it away from me, ignoring me. I want a new phone, one that is safe, but I can’t afford it, and nobody will help me buy one, because I asked (My last phone lasted three months, because someone stole it, then after finding it didn’t have personal data on it, left it at the post office and my dad picked it up. I noticed it was gone and went home, and Mum raced out behind the car while I was reversing and couldn’t understand why I was angry with her. She’d called my dance school and told them to tell me she had my phone. My teacher made fun of me. I nearly hit her with the car. My pictures were gone. The post office people laughed at me for losing my phone. It was dirty. The stranger who called my dad to tell him where it was left said it was his son’s phone, so my dad was angry at me because he still thinks I am a girl, even though they raised me genderblind. I really liked that phone. When I had to get a new SIM for this one, they gave me a combination SIM, and as I was sorting out my bag so I wouldn’t lose the tiny thing, the attendant came back over and popped all the parts out, so I wasn’t actually able to get it into my phone. He decided he was “helping” by explaining to the retard, which is what I heard when I was walking out. The manager said he was very sorry, but he remembered the incident because he was the person who did it. I can’t switch providers – the account isn’t in my name. If I switched providers, they would give me a new phone with the plan. I can’t pay for the plan because I do not have money for that on top of medication and ice pads). It will be like my bear, and like the shows, and no longer be of use.

 

This is why there is Plan B. It is the same as Plan A, but it can’t be put off, because nothing works any more. It is a clear, logical thought that is rare in my brain. It is a conditional.

If your claim is denied, and they put you on unemployment, you appeal. Appealing is a legal process. It is not new. It will require you to undo all the work you have done in becoming functional, and go back to that old person, the one who worked seventy hours a week and had to lie about it, who only slept on weekends and ate one meal a day, who kept all the nasty things from work immediately mentally accessible because she had to be faster and stronger and better and do three people’s work because one of them wouldn’t do her own and make work for two as a result. You have grounds, because they gave you the wrong kind of appointment, and asked irrelevant questions. You’re already thinking in contingencies, laying the groundwork, a paper trail, and preparing the forms. You’re already dissociated. They need you to appear sensible, reliable, non-threatening, so you will have to abandon everything you’ve done to reassert your individual identity, go back to looking like a girl, because people think certain ways when they see a girl, and you have to appear like a girl who is stronger than a man, because that’s what the environment requires. You will have to fight and not cry, and you know delegating to another lawyer will not help, because when they lie to you and act without your permission, you will have no recourse. The only way to get through this is to retain control. You can’t ask for help, because nobody can see you like this. You won’t be you.

You will win, but then you will have to make your point. You can’t break it all down and expect to build it back up again. That will be it. You already know how it ends.

 

I’m halfway down. I sent a carefully crafted complaint, packaged in a certain way, because it will prove that I tried to speak up, and it will function as proof, because there will be paperwork on the other side that I can ask for to correspond. I know this game. I lived it, and it nearly killed me the first time, the second time. Things come in threes; in comedy it’s because everyone expects it the fourth time.

 

My psychiatrist isn’t back for nine days. I was meant to know his schedule, everywhere he practises, his best contact. I refused to give anything I knew of his routine. The man wanted to clarify one thing; he wouldn’t ask me. He can use the contact my psychiatrist gave him. It will give me time to prepare, to make everything perfect. Next Thursday, at 12:01am, I will have to click a button to say I am following a legal obligation I do not have and cannot comply with, because there is no other option, and I will fall asleep covered iin blood. I have a show at the end of the month and the only person I have who I am not related to who actually cares about me beyond being paid to do so expects me there and I cannot let him down. He will buy a ticket for my show, and be the only one who comes. It may not be enough.

 

 

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