make. it. stop.

CW: medical/trans drama, suicidal ideation, dysphoria, panic attacks

 

Thank you for your nudges, likes and messages since my last update.

 

I had hoped to come back with great news but alas, I cannot.

 

The Zoladex, after ramping to a critical mass of hormones, ended up working. The migraines faded, as did the pain, and the gynaecologist admitted to having delayed my hysterectomy and I was given a date. This came with a warning -that on the day I would have to fight for it. Instead, I needed to fight -not- to have it, and I failed dramatically. And, now, kinda dying? Maybe.

Continue reading make. it. stop.

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A New Low…

CN: “helpful” people, discrimination…

 

So if I had known that I would be going for over a week with no rest days and spiking pain and other, yucky, icky, blerky issues, I may not have decided now was a great time to be trying concerts again. But, I went without food for a week or so back in August and bought a ticket to see Skillet. Because, you know, Skillet, right?

 

Come today and I was regretting this immensely when I got stabby spiky pain about five minutes before I had to leave. I had prepared everything though; I had instant ice packs, my medication in the box with the prescription label on it so nobody (SECURITY) could say it was illegal and take it away. I had money for a tshirt and drinks. I had my knitting. I was good to do this with the least pain possible, and it was going to be a treat, and I could just, like, maybe actually sleep after (ha).

Continue reading A New Low…

I can’t even right now.

CN: codeine drama, disability discrimination, vague mentions of trans issues/surgery

 

I seriously have no idea what I’m meant to be doing right now or how long I have. Really.

 

I had just seemingly gotten past the ‘you know you can’t have these forever’/’okay what does that look like’/’YOU KNOW YOU CAN’T HAVE THESE FOREVER!!’ and into turning up, getting script, filling script, and not being terrified that I wouldn’t get the script. I had just started to be okay with regular doctor trips and I thought I could say some of the stuff that makes me sound a bit more like a hypochondriac, like the fact that I feel like I can’t get a deep breath and that my left side of my chest rattles when I move or bend a certain way, and I constantly have this pain in the back of my head that isn’t a migraine, it’s just pain, and…

 

Then I was told I had less than two weeks to find a new doctor because not being threatened is more important to him than treating patient – which is, essentially, what this boils down to: ‘We will be reviewing scripts that do not fit this criteria.’ That’s it, like. That’s all it took.

 

I was in there for over twenty minutes. I should still see the specialist in September. I should go see the specialist he already said wouldn’t help me and suggested I cancel, as well. I should just find another doctor.

 

The thing is, I can’t do that. It took me nine years to find another doctor who listened to me enough (he’s not perfect; he uses the wrong pronouns and the wrong name and can’t say anything concisely and wanders all over the place like he’s trying to justify this to himself rather than relay information to me, and that’s before I get into how I’m treated by the reception staff – suffice to say that being shoved in the quiet room for not processing information fast enough is the least offensive thing) to get things done. I’ve already tried everyone I can get to, and that range has significantly narrowed in the last six months. The landscape has now changed – as we know, some doctors (entire clinics, even) now have blanket policies of not prescribing, and now there’s pressure not to do so, and letters being inerpreted as threats. “Find another doctor who will prescribe it because you need it,” even if it was simply a matter of, you know, going to another doctor and them saying well of course I’ll do that, is a thing that takes longer than nine days – it can take records months, even years, to be transferred. And even then, unless things change, both radically and quickly, it’s, at best, a short term solution. But it’s not a guarantee. It’s not simple.

 

I do not have a disability parking permit. I do not have home help. I do not have a registered chronic illness plan, I do not have an NDIS plan, I am not on waiting lists. Every time I was told I had to come off them, I explained that I cannot care for myself without them, and no arrangements were made, no forms signed; I was given a script.

So he goes ‘what happened last time you had a day when you didn’t need them?’. That was well over two years ago. I haven’t had a day where I haven’t needed them since the Mirena screwed everything up. I will need them until I get off the waiting list for a hysterectomy, and then not having the hurty bits and not having the hormones will do more than medication ever could.

 

But I can’t make it until then without them.

 

I also cannot afford to see the pain specialist. Whom, I remind you, refuses to let me type, wants me to pay extra to bring a translator who can’t translate because I won’t be allowed to type, and whom the doctor said is unlikely to be helpful given that attitude.

 

So every time I was asking ‘what does it look like, not getting the script?’ I wanted to know what kind of help I would be getting instead.

 

The instead is, apparently, ‘find another doctor in less than two weeks’.

 

Since Tuesday, I have been having panic attacks. More than daily. I just had a shower and had a panic attack because I thought ‘in a few weeks I won’t be able to do this’. I burned myself yesterday and didn’t notice, because my hands were so numb. ‘In a few weeks I won’t be able to even cook’. I was trying to play a game and had to stop because even with brightness at a minimum, the light hurt too much. ‘In a few weeks I won’t be able to watch TV.’

Needless to say, I haven’t really been capable of going to find a new doctor, nor have I been sure enough that they’ll listen to me instead of putting me back on the mental health ‘if you just have CBT/schema therapy/see a psychiatrist/stop taking the medication you’ll be fine!’ – because I have been either asleep, shaking and crying too much to be able to stand (in a few weeks I won’t be able to stand), or mentally going through how or who or where the money will come from or…

 

I have a plan, kind of. I can explain to the chemist and ask if there’s someone they’d recommend. I still have a stash, so I have a bit longer, perhaps, but I can’t wait for an appointment. I have an appointment with the gynaecologist this week, and I’m unlikely to be able to get through it without breaking down, and that might get me moved up the waiting list. Not soon enough, most likely, though. And also, having to be able to go there means I basically can’t do anything else this week that involves leaving the house, lifting anything larger than a ball of yarn, or fine motor skills.

 

But there’s also the looming spectre of being housebound, unable to walk, unable to see, and no help – not being able to make appointments, and having them taken away; being unable to move and not being able to do anything.

There’s also the anger; I hate taking medication. I have been asking for alternatives and options and treatment and always been told things like ‘it’s working, so it’s fine just keep taking it’, ‘there’s nothing wrong’, ‘it’s too hard and it’s working, so keep taking it’, ‘it’s stopping your periods so don’t stop taking it’ (what if – I can’t even write that). There have been so many opportunities for me to get help, and it’s been flat out denied in the form of dismissal or violence or ‘you’d be fine if you just thought positive/got therapy you can’t afford because that totally works if you put more effort in than you already have because you just weren’t trying hard enough/did yoga and hugged trees/etc.!’.

 

There’s the memory, vague because my brain had basically stopped being able to function, of collapsing on the floor, dry retching from the pain, and passing out, after only three weeks of only taking ibuprofen. That was when it wasn’t this bad. Going back to that now is simply incomprehensible.

 

“Find another doctor,” isn’t simple. It’s so unlikely as to be impossible. And what it is, is the doctor placing the responsibility on me for his fear of being maybe possibly investigated because some random secret body is breaching patient privacy (oh yes, that’s a thing – did you know all your scripts, with your name on, are being collected and monitored? No? Well, there you go.) and interfering with treatment in a way which is simply not legally mandated and certainly hasn’t been publicised with enough warning to patients in order to preserve continuity of care.

 

Edited to add: Proof that it’s not just me!

Seriously, I reached out to people and they hadn’t heard of it, but…. it’s a real thing (and based on erroneous statistics, no less). And if the RACGP disagree with it, and are concerned with it, then I say that they should offer free industrial support to all registered GPs as an urge to not comply.

 

 

 

Compassion is indeed dead

CN: disability discrimination

 

Today I had a task – make appointment with specialist for urgent test.

 

I wrote out my letter, as I always do, with my name and that I want to make an appointment and asking for accommodations for my disability and for a copy of any forms so I can fill them out at home since I can’t write very well. Armed with my letter and the referral, I fought against rush hour traffic and made it in at around 4:45pm.

 

Well, first the receptionist took my letter and walked out on me.

Continue reading Compassion is indeed dead

Today, I Cried

CN: sexism, ableism, internet harassment

 

Today, I cried. It didn’t last long, but it finally got to me, and I cried.

 

Three weeks ago, I was participating in a discussion on a site I regularly go to, where I felt comfortable saying the a-word and the s-word, and the thread was stated to be closely moderated for things like the s-word, and harassment and.

 

I was, pretty much immediately, told that other people were allowed to have opinions too and if I couldn’t handle that I didn’t belong on the Internet. My actual post wasn’t referenced in any way; it was just a personal attack. I pointed out as much. The poster went off at me, calling me various names, outright stating that they didn’t think I was worth talking to as they’d decided I had a mental health condition, said it was weird I called them out because they didn’t actually say anything relevant anyway (you know, what I pointed out), claimed that the harassment was actually them sharing their privilege and I was silencing them by calling them out for it, and for the last two and a half weeks, it’s been the same comment, over and over.

And over.

Now, since the post was meant to be closely monitored for such things, naturally I assumed that reporting it would result in some kind of mod action, and in the meantime, kept explaining. I ran it past my mum, past people on Facebook, and I was both sure and reassured that he had actually screwed up. My mum pointed out that if I stopped replying, it looked like I ‘lost’, and asked where the mods were.

 

So it’s been three weeks of me receiving multiple comments a day where my mental health was called into question for standing up for myself, and then painting themselves as a victim (did I mention that they called social justice irrelevant?).

 

Today, I napped for an hour and came back to find another one, accompanied with a mod comment.

The mod comment boiled down to ‘I’m not saying he’s right, but I think he set up a bot to harass you so you should just move on because you probably have better things to do!’

 

And that’s why I cried.

Instead of taking action to stop or prevent the harassment of people like me, the mod position is ‘let it go’.

Because, of course, instead of speaking out when people deliberately act to hurt us, we should just take it, since they’ll be allowed to set up bots to harass us anyway (nvm that it’s apparently a bot that’s only online when he is, and has no regular scraping interval).

 

I don’t even have words for how wrong this feels, and that’s why I keep starting to cry.

 

Firstly, that it was allowed to go on so long, in a post where they explicitly said they were policing such things.

Secondly, being told to move on places the burden of dealing with this firmly on the victim (which is me). It says there’s a threshold for how much these things are allowed to hurt us, and a correct way of dealing with it. It minimises how these things affect us. Someone designs a bot specifically to harass you? Move on. Never mind that you can’t go anywhere online without it telling you you’re insane, feeding those little dark anxiety monsters in your head.  However, that’s not the point. The mod requesting action from me to end this, instead of taking action against the person who is hurting me, is displacing the burden of their actions on to me – it says they’re allowed to harass me, but I’m not allowed to show that it hurts me or explain why.

Thirdly, ‘lol it’s a bot it’s pointless because he moved on’. It’s a bot specifically designed to harass me. They didn’t move on. They explicitly took action to minimise the amount of effort to put into harassing me because that’s how much they cared about the effect of what they were doing. The mod is like ‘it’s pointless because he’s not reading it’. But that’s part of the point – that they can casually and simply harass people, and have a large impact from a small effort. It strengthens the already normalised and internalised structural inequality. It’s saying ‘lol it won’t work anyway so why try?’.

 

The mod’s actions here have compounded and crystallised the hurt I felt from the initial reply and subsequent harassment – by trivialising the ease with which the harassment was allowed, and placing the burden on me to deal with it in a way they feel is appropriate, they are tacitly approving of it.

 

Did I mention this is a gaming forum? Post-Gamergate?

 

The only words I had for the mod were ‘If that’s allowed here then I can’t stay anyway.’ Because after three weeks of someone targeting me specifically because I dared to be open about how I was being treated, I’m all out of words. I have spent my life being harassed, for various reasons. I started ignoring it sometimes around high school, and it became a game to them, to get worse and worse just to see if they could make me react. I learned that the only way to stop harassment is to make people understand what they’re doing is wrong; that’s not done by telling them directly, because they get offended and defensive, but by creating an environment where it’s not okay, where people are allowed to stand up for themselves and are made to feel safe about doing so. If people see that someone who is sexist, or ableist, gets called out, they will, eventually learn that is the consequence of hurting someone that way. People who don’t want to do that will learn not to do it; in this case, the person hurting me didn’t care, and they got away with it because I was the one being told to move on, to behave appropriately.

 

Because, you know, when someone hurts you, you’re meant to act the right way so as not to upset anyone else.

 

I can’t even make this make sense or adequately explain why this is the action that is so hurtful. I’ve said that it comes across as allowing the harassment, that it’s placing the burden on me to behave the acceptable way instead of expressing my hurt and saying why it hurt me, that it reinforces the privilege that lets people think they can do this instead of making a safer environment for everyone.

 

But this has hurt me, and if I can’t say it there, I’ll say it here: it’s not okay. It is not okay for a privileged person to dismiss my opinion as emotional because I am not male and therefore subject to such things. It is not okay for a privileged person to (repeatedly!) tell me that my opinions are not valid or worthy because they decided I have a mental health issue (that’s right, I’m not out there as neurodivergent, they just… came up with it on their own…). It is not okay for them to repeatedly dismiss and hurt me for pointing out that they hurt me.

It is not okay for the mod to choose to behave the same way instead of taking action against them. It is not okay to allow them to continue at the cost of hurting me.

 

‘You know, he doesn’t even have to put effort into how he’s hurting you! Just move on!” is how structural inequality is reinforced.