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.