Being Too Visible

TW: disordered eating, medical professionals being sucky, gender biases, religious discrimination, workplace harassment, self harm

So, the reason I knew I could no longer stay at oldwork wasn’t that I was sick of every day being assessed on what I wore – how conservative-professional-female it was, how many times I had worn that dress before (there was a spreadsheet involved, I believe), are you sure you should be wearing those heels – or that I went from being overworked by doing my supervisor’s job (illegal) as well as mine and half of the department’s, to being the receptionist and assigned more work “because that’s what you need”… as if working for the man who actively prevented me getting the work I already had done so that he could harass me about being spiritual and Catholic, or whatever else was on his mind that day, and who whistled at me when he wanted my attention, is what I needed. Or anyone needs. Ever. It wasn’t that the one time I went in on my day off, dressed as myself, that the level supervisor followed me around, measuring my skirt and going “is that really professional”… on a public holiday, when the office was closed.

“I am here on my day off, and I had plans already;” I said. “I’m dressing comfortably today.”

Comfortably being a minidress and boots and enough chains to secure a trailer. But still.

 

The reason it was intolerable wasn’t that I had a migraine all the time, because the office was stupidly bright, with overhead lights, floor-to-ceiling windows with no curtains, and a supervisor who insisted in writing emails in HTML red, knowing it had sent me home before, literally unable to see. I remember that day. I got our intern to read the email for me, I went upstairs to the manager, and I said I was going home. My parents were visiting, and we’d just had lunch, and they were surprised to see me at the bus stop.

“She sent an email in red,” I said. I went shopping and bought a pair of new sunglasses, the darkest legally available, and I started wearing them in the office.

 

It wasn’t that she would tell me not to do things and then complain that I hadn’t done them, leaving me to explain that I’d known they needed to be done and been told not to, which of course, she denied, because her instructions were in code on post-it notes that I routinely had to translate for everyone else. Or, you know, verbal. So then she could drag me into her office for an hour and be like “well you don’t understand if I don’t tell you, your actual work can wait”.

 

She disappeared for two months, and I had all my outstanding work, built up over an entire year, done within three days.  “It’s women’s problems, sort it out amongst yourselves,” I was told, by the all-male upper management, who only stepped in when there was an emergency on her work-from-home day and she was at the hairdresser, not taking calls. I just shrugged, and said she did it all the time.

I then got told off for following their instructions to copy all her “can you do my job” emails to them. But you know, that was normal there. I was the best equipped to handle it – the one they sent in with bad news, the one who did the talking for everyone else, even after the incident with a hand low on my back during dictation, which turned into a lecture when word got out – “I wouldn’t recommend dating your superior, you know, but you have my full support if you like him and you want to.”

Because, you know, when someone’s like a daughter to you, and you come out as asexual in response to trying to set them up with the intern, you just harass them about how best to enter a relationship with the man who sexually harassed them until they snap and make up a boyfriend just to shut you up. Of course. That’s what all reasonable people do.

I found out after that she didn’t believe me anyway, because I didn’t talk about him the right way. What. Ever.

 

But that wasn’t the reason I left. Even when the panic attacks started, when I was marched around to apologise to everyone for disrupting them, forced to “talk about my feelings” when they threw only my food out of the refrigerator, when I was told to get back to work when I was collapsed on the floor and physically unable to move, I stayed. My parents wouldn’t support me if I left, and everywhere I tried for temp work told me that they didn’t have any room for new temps. One startup promised me a job as soon as they had enough work, and kept hiring other people “because we can’t have a graduate doing admin work” and I was told to “stay for the experience”.

I did get experience – I had the top barristers leaving positive recommendations on my LinkedIn, but I couldn’t get in to work at the courts because they loved me but just didn’t have the funding for another position. I still have people approaching me for help.

 

But in the last fortnight before I left, I started making myself throw up just so I could get away from my desk. It wasn’t the make-myself-throw-up that came from actually wanting to – I wasn’t anorexic, throwing up to keep weight off; I wasn’t bulimic, throwing up after binge-eating. It wasn’t that at all. I would sometimes go make myself throw up just so that I had an excuse to get out, to look sick, so that people would leave me alone. That started weeks before, once or twice a day.

In the fortnight before I left, I didn’t have my general routine any more – I didn’t have to get there at 6am to have all the emails printed, filed, and acted on before she got in, so I wasn’t getting my bacon sandwich at 8am and eating it at my desk as I made a graphic for the firm Facebook (because I was running that too), and handling incoming enquiries from our partners and website (because I was doing that too – assigning work for the entire firm). I wasn’t skipping lunch entirely, or running down to the restaurant on the corner where they knew me and not to put butter on the sandwich, then eating that at my desk, keeping the oil from the caramelised onions from dripping on the three files I was working on at any given time.

One day, a deli at the back of the block had a sign out: ‘Ham and cheese croissants! Sale $3.50). At this point I’d been dairy free for six years. The croissant was a little burned, the cheese was plasticky, the ham was hard, but I didn’t care. I ate it in the lunch room and went back to my desk, which I’d been told I had to make half the size, so they didn’t think anything of me starting to take things home. As I sorted files and packed away the family of plush animals who’d been supporting me, one by one, over the time I was there, I waited for it – the feeling of my throat closing up, the sweating, the sudden dizziness, the intense abdominal pain – and when it came, I went and threw it up.

By the time I left, finally, with my desk mostly clear, except for the Hello Kitty I abandoned because it came from her, I was throwing up at least six times a day. Sometimes she followed me, talking to me through the door, asking me how I was and telling me what I had to do when I got back. I probably spent an hour in the bathroom each day, away from my desk, away from her. I looked forward to the mind-numbing boringness of Reception, because I was away from her, and the other departments preferred me there, because if someone rang I was the one with the best chance of knowing what they meant. Sometimes I was there for an hour and a half – so I had two and a half hours away from her, plus lunch, so nearly half the day.

 

It wasn’t enough.

 

Nobody knew this was happening. I was always very clear about my dietary needs – I’d refused to go to the Christmas party the year before, because I’d put down in my RSVP ‘allergic to dairy and pumpkin, does not eat meat’, and the marketing manager rang me up and spent half an hour informing me that she was going to order for me, so she wouldn’t have to tell the restaurant, and plain roast vegetables would be fine. I worked for her – I had access to the spreadsheet, so I deleted my name. The food they threw out? Was my soy yoghurt, and my organic jam had ended up in the freezer. I pushed down the tears and tried to get back to work, but everyone had to stop me and ask why I was upset, and I wasn’t allowed to say ‘none of your business’. I still remember her reaching out over the table, grabbing my hand with her cold bony one, and going “oh, and your food is special, too, it’s so expensive.” This, from the woman who forced me to eat cheesecake, because “a little bit won’t hurt”. They made special accommodations for me at staff meetings, once or twice, but because nobody else ate my biscuits, they went to ordering pizza and leaving me out entirely, as the smell made me sick.

So nobody knew that I was trying, deliberately, to make myself sick, to get out of work, because they weren’t looking, even though it was something they were happy to otherwise police. I was hoping for anaphylaxis, and every time the reaction was worse, I was happy, because I was closer to somebody seeing, to getting hospitalised, to not coming back. I’d been in hospital the previous year; I was graciously allowed to leave “early” since I “more than made up the time” to go to the doctor, and the next day I had an emergency appendectomy. I took my medical certificate in the day after I was released, and when the manager said “see you Monday” I said no. I already had my leave booked, and I was taking it. I had a week either side of Christmas, and then she didn’t come back, and when the courts started emailing me at home, I realised something was wrong – she’d been giving me work, not even knowing I was not at work, because she hadn’t checked her email. I remembered that time, being away from everything, no contact from anyone, and I wanted that again. When she’d come back, see, all the work I’d done in making her tolerable had been forgotten, and that’s why they noticed then, too late.

 

When I went to the doctor, the day before I left for good, the first thing he said to me was “you’ve lost weight”. As far as an old misogynist man goes, since I hadn’t been able to go to see him since starting there, he was happy to put me on a mental health plan and send me off to a psychologist (also a misogynist old man). I was able to use that she’d followed me to the toilet to get out of going back, when they forced a Return To Work meeting on me with a day’s notice, and said that it wasn’t okay as long as she was there – that putting me on another floor wasn’t enough. I was still losing weight. I spent the night before the meeting in my room, scratching a hole in my wrist, and the psychologist still tried to make me agree to go. I ended up agreeing just to make the meeting stop, went back to the doctor, and got a new medical certificate to say I was not to attend any more meetings. Everyone reacted – nobody listened. I was still throwing up, even though I didn’t have to, and I wasn’t deliberately eating food that would make me. I had my gall bladder out – I didn’t agree to it, it just happened, because I was at emergency twice in a week, unable to keep food down.

It turned out, after that, that I did get my wish, in a way. The constant throwing up, especially since it ended up lasting nearly a year, and still happens randomly now, three years after my gall bladder operation, left me with permanent damage.

 

The problem is, that because I’m not anorexic, because I worked bloody hard, on my own, to change my eating habits back, everyone has a different cause for the damage. I discovered, on my own, that heavily starchy foods and foods with high levels of wheat gluten cause abdominal pain, so I cut them out, and make them up with gluten-free pasta. I switched my entire family over to rice milk, and when my parents visit now they only get non-vegan food if they buy it and they know I won’t eat it and it doesn’t go on my plates. (Unless they forget, in which case I make a show of bleaching it, so they remember.) By the time I was put on medication for reflux, of all things, I had managed to stop it almost entirely, by eating only small meals (like, less than a cup, a day), and sticking to foods I knew were safe. The medication did nothing. I’m told that was because taking it for the entire length of the prescription wasn’t actually long enough for it to work. (My psychiatrist told me that, you know, the one who now says he has no idea about pain.)

In the last year and a half or so, I have become super-sensitive to food, so I still have to be hyperaware of what I eat and where it comes from, so that I can track reactions back, but that is a thing which is within my capability to do. (And yes, I’m aware that this sits with many of my other symptoms within the same timeframe as possibly indicative of MS. Get this: “You were examined by the best neurologist and he found nothing so you don’t have it.” Except, you know, for the part where now everyone else has decided that it is, you know, neurological. But some dude who wouldn’t let me talk to him and laughed at me when I jumped because he came up at me from behind without letting me know he was even in the room? Always right.) But I don’t throw everything up, because if it hurts I stop eating, and if it doesn’t hurt, I don’t eat much anyway, and it’s not like I’m ever hungry.

See, the damage comes from, specifically, the prolonged throwing up. It’s not gastritis, because there’s no reflux and no heartburn (apparently). One person said duodenitis, but he didn’t perform an examination, just said it was possible because of the pain. (Now everyone thinks that, apparently. This is how we get mistreatment, people.) But most of the damage has healed and/or is now not getting worse, because of the work I have done specifically around food.

 

The reason this is present for me today is that I have been thinking. Everyone used to be so obsessed with the concept that I must be anorexic, in part because I chose not to have periods (due to not being female, and the fact that they are unpredictable and hurt like hell, der) and not having periods apparently always means anorexia, and because I don’t eat the same way. I had to keep a food diary for the psychiatrist, and he was very upset that I didn’t eat properly, and then I had blood tests and everything was fine. Well, except vitamin D, because I sleep during the day like a person with delayed sleep phase syndrome. It suddenly didn’t matter that I was vegan, because I had enough calcium and iron, or that I only ate mostly yellow food, because green food tastes disgusting, because I was apparently perfectly capable of feeding myself.

And then, he didn’t ask any more how the eating was going. And suddenly, it wasn’t an issue for me. I didn’t look at the clock and go ‘oh my goodness I haven’t eaten for six hours I’m going to be in trouble’ or go ‘I have had leftovers for three days I must have a different vegetable or I’ll have to have more blood tests’. I didn’t have to put up with ‘what about seeing a dietitian or joining an online support group’, because I was grown up enough to not need help with my diet.

Until the IUD, everything was fine, in that regard, to the best that I could make it. The IUD has made me start losing more weight, because what it put on is now coming off. I don’t weigh myself, because having a series of numbers to track means, you know, graphs and analyses and attention and pressure and goals, and we all know where that leads, and I am not going down that road now. I know, because my corsets have gone from helping with my back, helping with the abdominal pain, to not being tight enough. Therefore, I am in more pain.

 

So what we have here is damage that is being misattributed, and an increase in pain due in part to the misattribution and due in part to being mistreated. (And me, because I did promise myself that if anything went wrong I would walk out, but when they took my bear away I couldn’t bring myself to leave without him, and then I was unconscious, so.)

Now the thing everyone is obsessing about is pain relief. And it’s making me that same kind of paranoid. Every time I see the psychiatrist, he wants to know how many I’m taking. It doesn’t matter to him that I was sent home from the surgery with Endone, which I am allergic to, and therefore could not take. He’s relying on the outcome of an appointment with a general physician, from back in March, before the surgery, and to whom I won’t go back, because she dragged me across the room, pulling on my bad shoulder and actually pulling it out of place, then wouldn’t leave me alone to dress again and first yanked my corset out of place, pulling one of the bones out of the channel, and then pulled my hair (and everyone who knows me knows you do not touch my hair), and during the physical examination I had no way of talking to her to answer her questions, which she asked too fast for me to even sign answers to. She sent me for an MRI, which is the last MRI I will ever have, because they managed to give me a migraine spike in the machine, and yanked the emergency button away, so I couldn’t stop it, and then when I was crying and unable to see, they stood in front of the door and said “at least we got the pictures! it’s all fine now!”. A complaint to the hospital had no response. I was struggling during the scan, moving as much as I could in the restraints, trying to get their attention, but I was not physically able to move enough to get their attention.

I don’t have a copy of those scans, or the report from the physician, because the psychiatrist is keeping them from me, the same way the neurologist didn’t give me copies of my other MRI or the CT, so I can’t take them to someone else. I do know that the physician couldn’t rule out rheumatoid arthritis, the same kind my mum has and is currently thought to have a hereditary aspect.

The psychiatrist is also relying on a conversation with the gynaecologist, the one who put the IUD in without my consent (I have to keep saying that, because nobody believes it’s possible). There is nothing in writing. The gynaecologist, obviously, found nothing, and the physician didn’t look at that pain because the gynaecologist was already booked, so the psychiatrist thinks that because the gynaecologist found nothing, there is nothing to be found – but the physician specifically requested to be informed of the outcome of the gynaecological examinations, because she suspected something else. I know this wasn’t done, because the gynaecologist did send me copies of everything, and only the first letter was copied to anyone else. I received a letter which said “here are pictures of your uterus, enjoy!” and I sat in the car crying for half an hour before I was capable of driving, and then I had to have a rest because my back had locked up. I gave them to the psychiatrist, specifically saying “these are not mine, I do not want them” and he said he would keep them until I wanted them back.

Because, you know, dysphoria is apparently not a thing. He won’t refer me for the gender therapy the gynaecologist wanted, either.

And, let’s not forget, pain isn’t his area.

 

So in between all this I am in pain. The general level of pain since the surgery is higher than before. Before the surgery, I could carry something on my hip and if it bumped my stomach it didn’t hurt. Now it does. The pain that the surgery was meant to find and fix is now constant – it is there all the time, a warm black ache that sits in behind the bone, the size of a fist, and reaches down until it finishes as a band around my leg, right where my stockings would end if the pain didn’t make them excruciating. I have had one day where my back pain has been manageable, and that was yesterday, because I was so tired I fell asleep through it, and then it woke me up. I was fine until I, you know, stood up. Nobody can agree what it is – it’s neurological, but the neurologist found nothing so it’s not, it’s gynaecological, but the gynaecologist screwed everything up, so it’s not, it’s muscular, but it’s neurological, so it’s not. I refused to go to the pelvic pain specialist the gynaecologist gave me the phone number for, because a pelvic pain specialist isn’t going to be able to do much for my shoulder or my knees, and I need someone who is actually accessible to me and is going to accept ‘genderfluid’ as a gender identity, which clearly anyone who works a lot with the gynaecologist who told me that the dysphoria was just conversion disorder and would go away with physio isn’t. The psychiatrist, despite promising a referral a year ago, didn’t send one. When I refused to go to this one, he suggested another one, whom I agreed to. Instead, he sent a referral to the one I refused, while telling me he was holding it, and now he won’t refer me to the one he recommended, whom I agreed to see three months ago, because in the time between three months ago and now, my ability to afford endless specialists has decreased, and so he won’t refer me. He won’t send me to anyone who bulk-bills, though, because he doesn’t want me on a waiting list (which, if he’d referred me when he said he would, wouldn’t be an issue now).

And everyone’s like “you can’t have your pain medication! You need too much! You can’t have your pain medication! It could hurt you! You can’t have your pain medication! OMG! If you don’t take it you won’t be in pain anyway, you won’t need it, so it doesn’t matter that you can’t get it without being harassed about needing it!”

Which boils down to the same thing as the eating thing – everyone’s paying attention, everyone’s putting their own rules and expectations on it, and I’m the only one actually aware of everything and working on it, but being dismissed. Instead of going ‘okay, the pain is preventing me doing this thing’, it is ‘what is the time how long has it been can i have one now how many do i have left where do i go next what do i say if i take more now i won’t have enough for tomorrow so i have to take more so i can go get more so i don’t run out tomorrow how is the pain now does the tablet affect it is it working who is right i can’t see no longer a debate take the thing’. So not only am I constantly aware of the medication, and in the position of being aware of what everyone else is saying, I’m constantly more aware of the pain.

But I flat out told the psychiatrist this:

“If I can get it without stressing about it and I’m allowed to manage it myself, then I won’t need as much”.

He said:

“If it’s harder to get, you won’t need it, because you won’t be in pain.”

 

He is a specialist in eating disorders, so you would think that the whole don’t-draw-attention-to-what-a-person-recovering-from-eating-disorder-is-eating-because-making-them-self-conscious-is-counterproductive logic would, possibly, come up as an analogy here, for him. (I suspect this is why he was so pressurey about food, until it was proved a non-issue. If he’d offered help for orthorexia, I might have been more receptive, rather than flat out refusing to be weighed at every appointment. “But you don’t have a history like that,” he said. Not that he listened to, anyway.)

But he doesn’t specialise in pain. He thinks I’ll get to a pain specialist, get a wonder pill, and suddenly not be in pain – I’ll be able to have a shower and wear high neck clothes without electric shocks down my spine, I’ll be able to stand without a corset, I’ll be able to walk without limping and see all the time with both eyes and knit without my wrists locking up and read books and understand all the words the first time. One doctor told him the pain shouldn’t be as bad, the other told him there was no reason for the pain, both only looked at tiny parts excluding the area where the pain actually is, so he thinks I shouldn’t be in pain.

Except I am. I have to sit on the edge of chairs, keeping my right leg out straight and as in line with my torso as possible. (He doesn’t see this, because his desk is in the way.) This isn’t possible in a car, which is why cars are of limited use to me, even ones driven by someone else. And, in my quest to maintain X days since I threw up, doing things that make me throw up, like sitting ergonomically correctly or eating during times when my back is really bad, like nausea bad, is not a thing I can risk. (Right now, it’s roughly a month.) I lie on the floor, on my side, with my legs out, and most of the time I have a heat pack that goes between my back and over my tummy-leg where that pain is mostly centred.

I know that stopping the pain relief doesn’t stop this pain.

 

This is something nobody knows, as far as I can tell – either they haven’t heard me, or it wasn’t important at the time, when the new rules make it more relevant now.

The other reason old-work was intolerable was because a pharmacist told me, that to protect my stomach from the ibuprofen, to alternate Nurofen Plus with Panadeine. Before then, the Nurofen Plus was left over from the post-concussion syndrome, and I took it for migraines so I could sleep. In the last few weeks at work, I got two packets on Monday, two packets on Wednesday, and two packets on Friday. Sometimes, on Sunday, I wouldn’t take any.

When I left, I didn’t need it. I stopped the Panadeine, because I didn’t need the paracetamol to make me throw up, because I wasn’t throwing up to get out of work anymore. When I had the operation for my appendix, months before I left, they diagnosed me at the hospital with a reaction to the paracetamol, because I threw it up and got the sweats and a rash in the emergency room. That was in December – so when I was told to alternate, I was fine with that, because it meant I could throw up at times other than just after lunch. The back pain started in February – I remember, one of the first days I got a full lunch break, I walked up to KMart and bought a $5 pillow for my chair, which didn’t help. The abdominal pain was there the entire time – I was diagnosed with PCOS because of it in 2010, and the only relief I have ever gotten was when my periods finally stopped, though it was still, you know, bad. (Obviously, having all that bleeding and a period? Not good. At all. In any regard.) But when I left oldwork, and I was allowed to work on my food in peace, and I could normalise my sleep to the right time for me, and I went back to only having a packet around for dire can’t-see migraine emergencies, the pain didn’t stop. Surprise!

The gastroenterologist told me to ask my GP for codeine without the ibuprofen, but he didn’t put it in his report, and when the GP refused (that was the “you won’t like rehab” one) but said he would if the gastroenterologist put it in writing, his secretary said the report wouldn’t be amended because he never said anything like that.

 

I don’t know how much of this is old(er) men, WASPs, feeling like policing younger female-appearing people (which I guess I fit into, since half these people refuse to acknowledge the part where I’m not, and the other half blame it on my brain), or how much is plain stupidity and a lack of either or both of listening and cooperation.

 

 

 

Today I broke down in tears over Skype.

My dad was really sick last time my parents were here, which is why they left so quickly, and he got into the doctor and got it FIXED! (OMG!) Apparently, the other doctor told him he didn’t have the thing he has and therefore didn’t need the medicine for it, and this new doctor was like ‘here, have your medicine back’.

So my mum was like “I understand. I believe you. You can go to a different doctor and they will say a different thing.”

For once.

 

So, I have to see the psychiatrist again next week. Last time he wouldn’t read the letter I wrote to him, so I’m going to date it, print a new one, and take it in again, and with it I’m going to put a list of things that I want.

  • I want a referral to the pain clinic, the one that I was meant to have a year ago and wasn’t done.
  • We will no longer be discussing pain, if he says it is not his area, and if he is unwilling to see that everyone else trying to set rules and guides for me is making it worse. If he was willing to send me for follow-up tests and he is willing to handle referrals to physical specialists, he logically must extend that to dealing with pain, and if he wants a specific outcome (i.e. he wants me to be receiving proper treatment and not managing with OTC meds) then he has to either be part of that and supportive. I will not be stopping pain relief until I get in to the pain clinic and have another option.
  • I want copies of everything he has – from the physician, from the neurologist, what he discussed with the gynaecologist. (I can get these through FOI, but it costs $55 just to apply and then there’s a charge per page, and my file goes back to the first time I was there, for the concussion. You would think that having an emergency admission for not being able to talk prior to starting at oldwork would clue him in that this isn’t actually a new thing, but no.)
  • I do not want ‘talking’ to be equated as ‘better’.
  • I need him to understand that when I say no to something it means no, not bring it up again every time. If he is going to say that I can only access treatment when I’m ready, he needs to respect that. If he is going to allow me to manage everything else on my own (like, say, how I worked hard on food without any actual support from him), he can’t cherry pick what he’s insistent on.

I expect this to be a dealbreaker, so I have a list of gender-diverse-accepting psychiatrists and if I’m right, I’ll be off to the GP with a letter explaining my understanding of what has happened, why I am not comfortable seeing him any more, and asking for a referral to a new psychiatrist and the pain clinic, and a prescription for safe pain medication (as in, one that doesn’t contain stuff I was using to self-harm). (And a hysterectomy, because yesterday I had a panic attack for almost no reason, and I’m legit terrified now that I’m getting a period, because my head has been weird and I have pimples again after they just started going away.) It’s actually not easy to get to the GP, and there is one on the list who is closer to me (a trans person here actually made a list and put it online, for which I am so bloody grateful you have no idea, even though I’m not technically trans, though some people say I am and blah), but I can’t deal with more new people right now, and fighting for disability (still nothing… three months and two weeks later) and with chemists.

 

When my psychiatrist was still happy to pretend pain was actually something he could discuss, he emailed a pharmacist and asked for a list of over the counter pain medications that were safe for me – no lactose (because lactose comes from milk therefore allergic reaction) and no paracetamol (allergic reaction). There was the one I’m on, another brand of the same one, and aspalgin, which I was told not to switch to because at the time he didn’t care about anything but possible gastric damage, and which would have the same effect. I don’t have other options without that referral. I know there are people who have to go through this without any pain treatment at all, and it sucks. If I’m meant to be getting ‘better’, then I can’t do that, because I won’t be able to leave the house on my own, and I cannot have anyone coming in, like, seriously, there is not a describable level of anxiety for that.

 

Perhaps I should put ‘get formal diagnosis of autism’ on there. I mean, I was tested in school, but we didn’t get the results, I just got skipped a few grades and special privileges like not having to attend class, so I don’t know for sure. I’m not sure that having another neuroatypical diagnosis would be any useful, considering how people react to the first one, but my dad already just says ‘she’s autistic’ if people get weird about me not talking (and then they magically grown empathy), and then if I said things like “I don’t eat green food because it tastes green” and “the pain is black/white/red all over” and “the sound hurts” people would have a reason to believe me.

 

I don’t know.

 

What I do know is that if people obsess over stuff for me, it makes me hyper-self-aware of it and then the outcome is undesirable for the people doing the obsessing than if they left me alone. What I do know is if this was about a high, or being pain free, then I wouldn’t be able to remind myself that when I see paracetamol or something with lactose (and I guess, now, gluten, or at least wheat gluten/starch/whatever) that that was bad for me and I shouldn’t take it, because it wouldn’t matter. When I take it and it’s not enough, I don’t take more, because it’s never enough.

And I would really like to stop obsessing about it and tracking it and having to be prepared to be yelled at, ignored, demeaned, put down, told off, or kicked out.

 

The real problem, though, is that even though there are a bunch of studies that show addiction in chronic pain patients occurs at a significantly low rate (like, less than 1%), everyone is totally happy to jump to that conclusion, and every time you try to present evidence to refute it and even to ask for the correct assistance, everyone’s so conditioned to think ‘addict’ that that is all they see. That’s why the pharmacist the other day wouldn’t let me explain that I have migraines and chronic pain that interact, because he assumed it would be a lie. That’s why the psychiatrist suddenly went from having everything go through him so that he could assess it and translate for me (he draws these little diagrams like I’m a kid and not a person with a 7-year degree and enough personal injury experience to spell things without looking them up first), to “pain isn’t my area”. All I need, according to the nice pharmacists, is a letter from a medical professional to say “yes, I’m seeing this person, and I know that they’re taking this medication, and that they understand that it’s not a miracle best ever super duper drug to fix everything, but referrals take a while because we’re all in a sucky system”. It’s not that hard.

 

Except it is, and so, they’re making it worse for me, the same way everyone’s obsession about my eating nor only missed the point (in that I used my allergies for self-harm to get out of work, and now I’m meant to prove that I have them in the first place), but made it harder for me to work on that. Now it’s in my head all the time, and even in advocating for myself, I have to consider everything, and encourage that kind of hyperawareness that characterises the PTSD I’m meant to be “recovering” from.

I want to leave you with this brilliant article on what the tracking system should be and isn’t – the ‘isn’t’ is why I don’t support it, because that’s my experience, and I, also, haven’t had a pharmacist say ‘clearly you’re not getting the right assistance, here’s a pain specialist who’s taking new clients’. If someone said ‘the ibuprofen is hurting your tummy’, I could say ‘I work very hard to have a gut-friendly diet and I have healed damage from a previous endoscopy’. If someone said ‘you’re taking more than the recommended dose’, I could say ‘unfortunately, I’m not able to take anything else, and I’ve been told to maintain it until the referral for a pain specialist gets through’. Then they say ‘how long will that be’ as if I know, or it’s going to magically take a day, because I have used that one, and the pharmacist was willing to give me a 12-pack to get me through what could still take months. If someone said ‘okay, you have chronic pain, you’re making an effort to get treatment, if you come in for more than you’re already taking we’ll have another chat’, then that would rock. Similarly, if they said ‘oh, try paracetamol’ and I go ‘oops, no. allergic. kthnx’.

But this one time, I wasn’t allowed to have it, and the pharmacist tried to recommend Maxigesic (I feel like I’ve said this already), and I signed that the paracetamol makes me throw up (short for I-am-allergic-and-used-it-to-self-harm) and she got her supervisor who said. “I know you can’t hear.”

Limiting it, when they can see on their computers, apparently, because they’ve been tracking it without telling people that’s what they’re doing, that usage isn’t going up, that I give the same reason every time, that sometimes they just give it to me because I so obviously look like shit, and when they’re not meant to, is just making the whole thing more difficult, more stressful, and making it a bigger thing for me than it has to be. I don’t drink, so it’s not worth making a drinking game, but a bingo card? Something to make it not like everyone is watching all the time being like zomg you can’t have dat u mite get addicted! its dangerous! wah!. I mean, come on, it doesn’t even have a patient information leaflet inside.

There was this one time I went in, I think it was after the surgery? I’m not sure when. Anyway, I went in and said ‘I need something that isn’t codeine, but is stronger than ibuprofen, please’. We went around in circles for twenty minutes.

“You can’t have codeine”

“I know, I’m asking for something else instead, please.”

“I can’t give you codeine.”

“I know.”

Round and around and around.

 

I don’t want any more than I’m taking. I hate having to have meds at all. I just want to not be in as much pain so that I can still do things on my own because having people do them for me is worse. Instead, it’s like everyone wants to harass me into being what they want me to be, so they can justify their existence, or something. I don’t get it.

Anyway.

 

tl;dr: i have a pattern of when people obsess over stuff i do it makes me super self-conscious and exacerbates the behaviour they’re obsessing over and attempting to police. it doesn’t help.

 

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