Hosting Iron Pen in A&E
- Mar 3, 2005
- Red Deer, Alberta, Canada
When I want to make normal people uncomfortable, I call myself a cripple, because according to their textbooks, such a word is strictly verboten.
1. There are many definitions and perceptions of 'normal'. As someone who belongs to this forum and the wider gaming and SF/F communities (yes, we are a community and have been for decades), you are perfectly normal.
I know your situation is not normal when it comes to health or the ability to do the things you want to do (or have to do), and to be able to take for granted that you'll have a pain-free day (and any pain you do get can be easily remedied with a couple of pills).
I never understood the idea of "I can't make promises because I have no idea if I'm going to have the energy to do that on such-and-such a day" until I was in that situation myself. It drives healthy people up the wall because most of them don't get it.
I haven't been pain-free for decades., and don't remember what a pain-free day feels like.
2. I'm not fond of the word "cripple" either.
None that I'm aware of. I've seen depictions of fibromyalgia, and they're always portrayed as lazy, good-for-nothing malingerers, so I have no real desire to see anyone attempt representation for ME/CFS. Technically, representation would lead to better exposure, but the only people with the funding necessary for it are the same people who think so little of us.
That was my own doctor's opinion, until she finally sent me to a specialist in Calgary. He diagnosed me with fibromyalgia, and I sat in his office and cried with relief that after so many years of being told I was "lazy" or to "snap out of it", a doctor finally believed me.
There are a few documentaries. I've only watched two, Unrest and... something else. I kind of purged the second from my memory because it was an edited hit job (which connects to my point above). Unrest is decent for a layperson, but eventually the creator got diagnosed with craniocervical instability (CCI) and has been somewhat in remission since getting invasive surgery to fix it.
Looking it up, there's this:
Oh, actually, I do remember one depiction. We were in House M.D. and we were diagnosed with a pyschosomatic mental illness (fancy term for "you're making it up") and subsequently cured with mints. Kind of funny that even in the "We'll never rest until we cure you" show, we're still nothing more than a joke.
So that show doesn't actually use a medical advisor or research company? Or if they did, they must have chosen to ignore them.