This morning I met a consultant who did a very good impression of being social model-influenced. He’s a fan of *real* self-management of chronic conditions, had a surprising respect for all my coping techniques (including my wheelchair use), and at one point said the immortal and highly-quotable words “Although doctors have a role, there’s no need to medicalize all disability”… Seriously. If I hadn’t been so delighted, I might have passed out with the shock.
Context time. I was supposed to be seeing one of the UCH-based EDS specialists this morning, but he has apparently left. (Bit of random gossip for EDS-y types – the future of the EDS unit at UCH may be in doubt. You heard it here first, and all that.) So I got passed over to his ‘replacement’, a very knowledgeable rheumatologist with an interest in EDS/HMS. He was funny, respectful and focused – he fired questions at me at a rather fast pace, and I’m pleased to say I kept up with him. “How long have you been in the wheelchair?” was answered with a pointed “I’ve been *using* a wheelchair since…” and a clarification of exactly how I use it. (Side note: My CBT woman will be so proud. We’ve had about three ‘wheelchair pride’ type sessions, and we practically planned my answer to this question together.) I answered other questions very well, too. I think I passed. Or something.
Anyway, my plan before this session had been to convince the specialist that I wanted a break from medical intervention, except where absolutely necessary, at least for a few months. I assumed convincing would be the order of the day, given reactions I’ve had to similar ideas before, i.e. less than positive ones. The reason for the ‘piss off, doctors’ approach is mainly that, as much as physio might be some help at some point in the future, at the moment it’s just pointless; thanks to my fun combination of impairments, it’s doing very little except exhausting me and causing more pain and difficulty, not less. And there really isn’t anything else for EDS, other than basic pain stuff. And I’m rather keen to, well, get on with my life. Ideally with an MA course too. But we can’t have everything.
So there I am, all prepared to have to convince the good doctor of the wisdom of this possibly-stupid move. Except that, when we had finished with all the ‘self-management is wonderful’ stuff, and had written SELF-MANAGEMENT! on my notes more than once, he announced that since I am doing so well at coping for myself, he wants to discharge me completely. Um, sorry? I pointed out that occasional check-ups from a consultant are advisable when bits of you keep threatening to fall off – and also when DLA renewals are due, but I didn’t say that one in so many words. He agreed to see me in a year (a YEAR!), but in his own pain management clinic, due to the confusion over what will be happening to the EDS unit. I was up for this, and asked about pain management courses, which might be possible after that appointment in a year’s time. Then I asked about stopping physio, and he said that as long as I’m doing an agreed exercise programme, he was happy for me to drop it. He freaked out The Girl by saying that he hoped she would be joining in the exercise with me. (She has since said she might consider joining me at pilates. I’m going to hold her to that one.) And, finally, he made me do a massive double-take by telling me that I need to ‘practice what I preach’ – re Disability Studies – when it comes to my own medical condition. Random. Seriously very random.
So then I saw my physio, who was suddenly in agreement with him – even about intelligent use of the wheelchair, which is a bit of a change for her. (I am wondering if the whole of UCH has suddenly got round to sitting through Disability Equality Training.) She’s given me ideas for an exercise programme that she would agree with. Her ideas are all quite dull, apart from possibly the pilates. I’m going to see if I can find out about more interesting wheelchair-based sport at Leeds. I’d like to see the physio’s face when I go back in a year and tell her I’ve been doing martial arts or boxing. Heh.
I remembered later that I had other things to ask the consultant, such as for help with persuading my doctor that I need pain medication that doesn’t make me constantly sick, and at doses that my EDS-y body doesn’t go “Ha ha, think you’re going to beat me with *that*? You are tiny and insignificant, you weakling Codeine Phosphate” at. But I was so distracted by the general WTF? reaction that I forgot. Anyone who might have any useful advice about persuading some very medical-model GPs over The Medication Issue, answers on a postcard please. Or in a comment. I think I shall pop over to see Lovely-But-Expensive Fibro Consultant before I go off to uni, if I can arrange it, as he was useful for persuasion over sleeping pills – another battle I keep having to have with GPs (silly buggers that they are) – and maybe he’ll have medication advice too.
But mostly, it seems that for the moment, I am Done With Doctors. I’m more than a little pleased. I have eaten a great deal of celebratory comfort food, including doughnuts, chips, cheese toasties and all manner of leftovers out the fridge. Apparently, being freed from medical control is not so good for my waistline. Ah well.
Oh, and some of my comments were featured on the Ouch podcast this month (it’s just gone online). They read out the least-funny of the things I wrote, of course, but it did seem to lead to some kind of debate over whether Nazis are better than lesbians. Or something. So at least I inspire interesting discussion. Or something.