I have to go to the GP today. I cancelled the last appointment and woke up this morning wanting to cancel again.
There’s nothing wrong with the GP. He’s young and enthusiastic, with a new doctor’s faith that he can battle the bureaucracy and come out a winner. He’s surprised when the PBS go out of their way to restrict access to medication that he knows will reduce my pain. He embraces my long typed note about my complex history and the list of what I need from him.
He’s keen to expand the amount of medical care that I can access. He wants me to see more people and to enter into some kind of complex care plan. He asked me to write out all the treatments I’ve had. I don’t think he understood how hard that would be.
I dutifully complied; crying as I recorded over two decades of treatment failure. So much time in hospital. So much time in outpatient clinics. So many drugs and potions and I didn’t even include all the alternative crap I’ve tried because it totally worked for someone’s uncle’s friend.
And the end result of all that treatment? A few months of remission here and there; more since the expensive drugs came along but even they haven’t been enough to keep me permanently well.
When everything went to shit 12 years or so ago and all existing treatments failed, the doctors and the hospital were relentless in finding something that would make me well again. Drugs were flown from the US or used off-trial. Experimental combinations were used and bits of me were sent all over the place.
I spent so much time in hospital, or in daily outpatient visits when I refused to stay there any longer. This went on for years. The drugs would fail (or I would fail the drug in their language) and I would have to start all over again.
The idea that I could stop, that I didn’t have to keep trying, that I could be supported to live well when sick, didn’t ever come into the picture. I was given no space or time or language to ever say ‘I can’t do this any more. This is horrible and hard and I just can’t fucking stand it any more.’
Instead, I did all the inspirational shit, being brave and all that bollocks. I did the videos and the telly and only fell apart in private. When I got well, I just smiled and said how awesome it was, instead of telling people that I was having flashbacks to being sick all the time, and sobbing so hard my muscles hurt.
I got a dream job and jumped into a million things. All those years of being sick somehow washed away. I wasn’t able to talk about how difficult being sick was because I was now well. The scars of my sickness, both inside and out, were to be ignored because my body now fit into a socially acceptable form.
And when the remission didn’t last? When the drugs failed, yet again? Try another one, back to hospital, more doctors.
Only this time I kept saying no. Over and over, I asked for other options. I cried, full snot, red-faced sobbing and begging for something different. I kept telling them that I just couldn’t do this again. I started to try to find the language I needed to explain what my body was telling me in no uncertain terms. No more hospital. No more doctors. No more.
Where is the space to give up? Am I meant to keep fighting some endless war on myself? Why can’t I find space to live with my illness just as it is for a while?
I have stuff I want to get done at the moment; writing finally feels like something I can actually do and there are words pouring out of my keyboard. Small, boring medications make me comfortable. Movement that works for the shape of my current body, with all its limitations, is bringing a peace I used to know from running.
I don’t want to spend the meagre energy I have dealing with new medical people and repeating things I know don’t work again, just to assuage the expectations other people have about being sick, let alone with a visible illness. But that still feels like a radical thing to say out loud.
So, I’m not going to cancel going to the GP. Instead I’ll try to explain this to him. I am frightened that he won’t listen; that he’ll take offence that I don’t want his help after all the effort he’s gone to. Instead, I want him to listen to all the effort I’ve gone to, for over twenty years, and hear that I just can’t do it again right now.
[Comment note: I do not need and will not tolerate any unsolicited advice on my decision or my health.]