I have another appointment at the amusingly-titled 'pain management clinic' next week. They sent me a text message to remind me. How kind. Now I'm going to be panicking all week, instead for just a few days beforehand. Lovely.
I've never been very good at saying no. I'm eternally determined to please all of the people, all of the time, and preferably all at once. I particularly seem to want to make doctors happy. And it's not getting me good treatment (in either sense of the word).
I'm tired of being treated like a small, rather stupid child by doctors. It's time to learn how to say 'no' to them. Even though that's going to mean a - probably temporary - refusal to work with them.
I've been thinking about this a lot, since October especially. I get diagnosed with a genetic condition that no medical professional spotted despite dozens of opportunities in childhood, and maybe hundreds in the past two years. What's the response from doctors? Do they apologise for being wrong for all those years? For treating me like I was stupid and attention-seeking and crazy and wasting their time? For inflicting, indirectly, damage that is unlikely to be reversed now? No. It's still Try Harder - Do More - Keep Going - Push Through The Pain - Do More Damage - Look More Normal - Be More Acceptable - Play Our Games.
No.
One thing I have firmly decided is that if they're going to continue to refuse me the help I ask for - from physio with local people who I trust, to any reasonable level of pain control - then I'm not turning my life upside down and shoving it in the toilet just to make them happy. I'm accepting the UCLH referral because they're apparently very good. But I'll walk away if they ask me to give up any more of my quality of life just so they can exchange my wheelchair for looking more 'normal' and being in a hell of a lot more pain. Which they don't want to help me to control anyway... (Anyone else ever feel like they're stuck in someone else's experimental hamster wheel?) Someone else is going to get used to hearing 'sorry, I can't help you' now. I wonder if they'll put up with it as quietly as I have up to now.
So, that text message ruined my day. I was going to sort out my garden and everything. Maybe tomorrow. I'm going to go and practice some driving now. Later, peeps.
5 comments:
"But I'll walk away if they ask me to give up any more of my quality of life just so they can exchange my wheelchair for looking more 'normal' and being in a hell of a lot more pain."
OK, i had to laugh at that sentence... presuming you didn't intend the irony ;)
My sympathies anyway. Basic tenet of both feminism and libertarianism, IMO: no one is more qualified to determine what is best for anyone's body than the owner of that body. The fact that our medical system does not recognise this is a sign of its roots in patriarchy and authoritarian paternalism.
I've had official-type people refuse to text me, or even to leave a message with their number on my answerphone, because "someone else could see/hear the message". I'd quite often far prefer stuff like that to be communicated to me by text, voicemail or email than actually have to have a conversation with them - but, that's probably the peculiarities of my communication impairment, and i'm sure for others it could be the exact opposite way round...
OK, i had to laugh at that sentence... presuming you didn't intend the irony ;)
Haha. Well done - I missed that. Although personally, I don't think metaphors and idiom necessarily always need to be changed, e.g. 'I see' by a VI person isn't necessarily a terrible case of internal oppression.. But I see how that one is funny in context...!
Yes, I think you're right about the NHS being rooted in patriarchy. That may be a big reason for my anxiety around doctors. I don't think it's nearly as pathalogical as I'm being told it is. By everyone.
I prefer communicating through text, too. I won't use the phone if I can possibly avoid it - if I have to talk to a stranger or official by phone, it can exhaust me for the rest of the day. Receiving a text wasn't the problem here - I quite like that reminder facility. It was being reminded about the appointment itself!
Well, I share your frustation and sympathize because I am horrible at saying no too - often because they just say that you "must do xxx" and what is the end result? Does anyone know? Does the doctor know? I was wondering if you would say "No!" to all my doctor's, and I would say "No." to yours becuase quite honestly, while the idea of saying no is tempting, then the anxiety over whether each phone call is a potential confrontation would wear me down.
I just recently said "No" to a pain management clinic. I have so many things going on physically, that I can't quite focus on basic pain management stuff right now. I think my chronic nausea and stomach pain interfere too much to even focus. So, after canceling with them twice, I actually called them up and asked to have my file put on hold for a bit while I dealt with other things. This relieved a lot of anxiety for me as I do tend to pressure myself to do everything possible, all the time, to get "better." Now, I have to remember to tell my doctor that I have put the clinic on hold. I don't want her getting a letter from the clinic and then assuming that I have a bad attitude about doing what I "ought" to do: that laissez-faire attitude thing I've blogged about!
LWG- I too share your frustration. I was able to realize ( after reading this) That I get so frustrated with some Dr's and therapists. I have been the science project for one physio and it was some what a good thing but exhausting. I was asked to come in 3 x's a week for an hour each... i think she thought me working harder and more would get my muscles to hold...lol She had some idea of what was happening but not fully.. I SHOULD have said no because inevitably I quit going-- I dropped out. Because I didn't say no numerous times to numerous Dr's I set myself up for failure ( and pain). Thank you for this blog!
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