I have a rheumatology appointment coming up tomorrow and ever since the appointment was made two weeks ago, thinking about it comes to the surface more and more. I’m nervous. I used to be nervous around doctors because the burden of proof rested on me to provide verifiable evidence that there was actually something wrong with me. The day I got my EDS diagnosis changed that. I knew that doctors wouldn’t have any less power and I wouldn’t have any more and that there was still a myriad ways of invalidating my experience of my condition and although I still came across doctors that despite the medical notes and confirmed diagnosis maintained that it was all in my head, I didn’t care as much any more. There was a safety net. It had many holes in it, but after a lifetime of falling off tightropes without one, it was a safety net nonetheless and I embraced it. The anxiety didn’t dissipate, it just shifted to something else: the loose-loose scenario. On the one hand, with a serious medical condition comes serious consequences. Doctor appointments might find that I have developed complications, it might ask me to consider big changes like whether I want surgery to try and stabilize some joints and it’s stressful to know that the comfort zone you have built your life around may be taken away in a ten minute appointment just like that, without any warning. The alternative is also nerve wracking. That of not being taken seriously enough. Doctors have a way of looking at the wrong things, fixating on the progressive and ignoring the self-limiting but often incapacitating issues. It’s not a pleasant experience to be invalidated.
The system seems to be split in two. On the one hand, there are doctors and consultants that only deal with the medical aspects. I’m happy dealing with them when required, such as when I can’t breathe due to a severe asthma attack or I can’t get a dislocated joint back in without help or when a migraine lasts for seven days. On the other hand there are disability related aspects and the people who deal with those. That part, I’m infinitely more comfortable with. I never thought it possible, but finally accepting that I’m disabled was a liberating and empowering exprience. It opened up doors that I would never have been able to open. I manage my condition well and I do the vast majority of the management without medical intervention. It has taken a long time to accept my limitations and live within them and even longer to get the assistance I require, or at least some assistance towards meeting my needs. I am in receipt of high rate DLA for both care and mobility components, I have a wheelchair provided by an NHS wheelchair service, I have specialised cutlery, a special chair, an environmental control unit to turn lights on and off, change the channel on the tv and unlock the door. I have voice recognition software to control my computer, a car bought because it will fit the wheelchair in the back without the need to collapse the back seat and I have funding for a part-time carer. I need all of these things to get through the basic day to day stuff; showering, dressing, eating, shopping and I’m okay with that. It’s improved my life quality significantly and its made the world a bigger place and allowed me to do things that I wouldn’t be able to do otherwise. But none of this comes into play at a rheumatology appointment. We fixate on the medical aspects and enabling seems to be more about trying to make me more normal than helping me live with the disadvantages I’m stuck with.
I know the wheelchair is going to be a problem. Rheumatologists never like mobility aids. I understand the concern, loosing independent mobility creates issues of its own and if you can walk, you should, it’s healthier and better for you. I get it. But the big picture always seem to go amiss. I walk as much as I possibly can, but there comes a point where it’s not a safe option. Falling over is a problem. I have poor proprioception, I tired easily and my joints wobble. Walking is difficult and painful. When I’m spending an hour each way in a car to get to an appointment, can only find parking a fifteen minute walk away from the hospital, end up sitting in a cramped, stuffy, bright waiting room for hours and then repeating all that on the way back after an appointment, it’s impossible for me to get safely to my appointment without my wheelchair. I’d be too tired to stand up by the time I get out of the car and after managing about ten steps, I’d be on the floor and falling over isn’t something I’m happy to put up with anymore. So we’ll take the wheelchair. Chris will push me down the hill and back up again afterwards. We’ll wait for the elevator whilst being stared at and navigate narrow hallways stuffed with chairs until we get to a waiting room that won’t have space for a ‘chair. We’ll have to either block one of the walkways or try to move out a chair to make space, but there will be no space to move the other chair to, so it will block the walk way. We’d get those looks usually reserved for people who arrive late at the cinema to take the only open seats farthest from the isle. Then finally, when its time for my appointment, I’ll be called in, the consultant will frown and watch as we try to make space in a tiny room, the kind that already have his very large desk and two guest chairs and that’s all it can take kind of room.And even if he never comments on my use of a wheelchair, the hospital has already done its job on that. It’s frustrating to have to go through this for every single hospital appointment. I’m tired of being run into doors and trying to maneuvre around furniture that doesn’t leave any open floor space and I’m tired of sitting in isles and halls because there isn’t anywhere else for me to go.
I’ve learned to be a lot more assertive than I used to be. I no longer apologise for my wheelchair being clunkier than walking. I no longer put up with any opinion that because I can walk short distances sometimes, I don’t need it. Mostly, I no longer put up with other people telling me what I can and can’t do and what is helpful and what is limiting. I was reading a blog article at FWD this morning and it stated that, “PWD aren’t “confined” by wheelchairs; PWD are confined by discrimination, thoughtlessness, and inaccessibility”. Bingo. As a patient, I don’t have a whole lot of power when it comes to medical appointments and medical opinion. Although my fears these days are largely irrational and the vast majority of medical professionals make the effort to understand my condition and how it affects me, I’m not sure the anxiety and that fear of invalidation will ever go away.I remember the first day we took the wheelchair out. I was still counting steps all the way. After seven it starts to hurt, after twelve it’s a fiery pain and around twenty I need to make up an excuse to stop and take a break. The feeling of realization that eventually dawned on me, that I didn’t need to slow down, didn’t need to continuously search for things to hold onto, didn’t need to window shop myself to death and boredom, was exhilirating. I still struggle with that old feeling when Chris pushes me too fast. I can’t keep up, I’m scared of falling over, it seems like such reckless abandon, moving as fast as other people can walk. Wheelchairs are wonderful, amazing things. I just wish people and doctors in particular, could stop seeing it as disabling.