Anything I post today will be incoherent and unfocused. I shall refine my thoughts when I feel better.
The medical model. It sucks, even if it does have the ability to make me ‘better’ (although how you define that is the issue at stake), because I have no power within it. It is designed to normalize, to ‘prove’ that invisible = nicer than mobility aids (even if that means I am *more* disabled as a result of that invisibility, because at least it’s more acceptable in polite society. Tea and scones, anyone?)…
I am very afraid of my physiotherapist. And of the treadmill I think I’m being put onto.
Yesterday I was told that my goal should be to live without mobility aids – and as soon as possible. Never mind the mess that would currently make of my life in between ‘walks’. I was not bold enough to explain that my wheelchair and crutches are the exact opposite of what this person thinks they are, that they have given me freedom and a life, and that I will not be giving that up just to make medical people happy. My pain was ignored, my fear of falling and being disempowered was dismissed in favour of confused ideas of “independence” and guilt trips, and I believe that my requests (poorly-expressed as they were) were not listened to. I was told to stand on one leg, I tried and failed, and I was left feeling that this means I will never be a worthwhile member of society. And today I hate myself and my life.
It is entirely possible that some of this is going on more in my bipolar brain than in reality. That doesn’t make my fear, distress and hurt any less real. It doesn’t change the fact that I am too frightened to explain myself, my needs, my views and the complexities of my condition.
Today I can’t stop crying. Church was a mess – I couldn’t focus on the beautiful service because I kept looking at my crutches and feeling guilty about them. And thinking that I’m ruining The Girl’s life. (She says that’s ridiculous. It is, nonetheless, how I am left feeling.) I would like some kind of sedation, please. I am seriously worn out.
If I ask to be taken off the treadmill, will I give up my ‘right’ to the kind of treatment that I do want?
If I try to stick with this and to express myself better, will I remain quite this disempowered and self-loathing? Is there any way to combine the social model with this kind of intensive, ‘rehabilitative’ (a loaded term in itself) medical treatment? Are choice, freedom and autonomy ever possible with medical people and their medicalized outlook? Can I ever have control of my own treatment?
If I choose to focus on pain management at the moment and leave the intensive physiotherapy for a time when I can better handle the emotional and physical mess it creates of my life, am I being incredibly selfish? Does it mean I enjoy being sick and want to stay this way?
Is it a bad sign that I’m thinking of ringing all my doctors and asking to be taken off their lists, for everything, including pain treatment?
Is it fair that I can get all the ‘rehabilitation’ I want, but that pain management clinics have eighteen-month waiting lists? And that no one cares how much it all hurts as long as I stop bothering people with my obvious differences? And that, since fatigue is invisible, doctors would rather I ended up back in bed and seriously curtailing my life and freedom, because at least I’ll be able to walk down the road some of the time?
How on earth do you – yes, I mean YOU, Dear Reader – deal with such disempowerment when you want to live by theories of Equality and Human Rights and Choice? How do *I* resolve the dichotomy of theory and practice in my life as an ‘ill person’?
When can I write that dissertation on power and control in the sociology of health and illness?
And where do I find an advocate who will co-ordinate my treatment with my needs and choices in mind, and ask me what *I* want?
Any and all answers appreciated, because I feel like I’m losing my mind here.