The first doctor told me not to read or learn more about RSD.
The next doctor told me not to think of myself as disabled.
The third doctor had me do EMGs, MRIs, and triple phase bone scans to make sure I really had CRPS. He was actually a decent one.
The fourth doctor did four unsuccessful needles into my spine, told me that if nothing worked that I would just have to deal with it and walk, and then he stopped treating me after I turned down the option of having electrical cords wrapped around my spine. He also refused to fill out paperwork that would help individuals with disabilities get jobs.
The fifth doctor made me do yet another EMG (and for non-RSD folks it’s a fairly simple procedure, but if you have RSD it’s miserable) to prove that I had CRPS (again), set me up on some sort of trial drug infusion that didn’t work and I mysteriously never heard from him again. He also refused to fill out paperwork. He didn’t “do that type of work”.
The sixth doctor, when grudgingly going in to see if the CRPS was spreading to my right leg, did the EMG on my right leg (it was more than uncomfortable), made it so that it now spasms whenever I try to use it, and refused to give me a script for hand controls saying, “I can’t see anything”.
When discussing a custom wheelchair with my personal physical therapist, another spoke up and asked “why would you need that?” and after explaining she also asked, “well, couldn’t you just use a bike?”
When going to a wheelchair dealer, I parked in the closest spot, walked in with my cane and sat on the first chair available. I was then told that since I walked in I didn’t really need a chair.
Eventually I stopped going to doctors. It was my body they were playing with and I wanted it back. I stopped trying drugs. I stopped trying experimental procedures. Eventually I found a rehab specialist who fitted me for my chair. Eventually I found a dealer who understood how important mobility was to me rather than walking. My GP told me that I could use my own discretion when it came to trying new treatments. He also helped me on my way to getting hand controls. I’ve given up on my canes. I use crutches solely so I don’t have to take blood thinners and use my wheelchair practically full-time.
My body. My choice.
I’m done with being shamed by doctors. I’m done feeling guilty because the public thinks I should be paralyzed to use my chair. I’m done.
I use a wheelchair. I don’t walk. I read about RSD/CRPS on the internet. I consider myself disabled. And you know what, I like it. I’m more comfortable in my body now than I have been in my entire life. I sit instead of stand. Roll instead of walk. I had independence taken from me by doctors who thought they were helping. I took it back.
I’m done with being shamed for my body. It is mine and if there is anything in the world that I’m allowed to be possessive about it is my body.
My body. My choice. My disability.
My decision on what to do with it.
Stop trying to take it away from me.