Can you imagine what it was like for those who went before us? In my country, they used to stick patients like us in the psych ward, and some doctors still want to try and do this. In this day and age.

Think of the patients diagnosed at the turn of the century, in the twenties, thirties, forties, fifties, sixties, seventies, eighties. There are some who were diagnosed in the eighties on this board.

I was diagnosed in the nineties; I've been living with this monster for slightly over 14 years now and not that much has changed. There are still patients out there who get diagnosed far too late. It takes a movement to change this. In my country we don't even have a support group dedicated solely to awareness for *this* condition. None! We used to have one, but the lady who ran it has RSD herself and it has become too much for her.

I thought things were going to improve and have done my best to try and get people to open up, by not shutting up about it myself, hoping others would share their story too, but as long as the atmosphere in my country doesn't change, it's not going to improve. People are just not talking about it openly. They're ashamed. They're scared. All because of the way we are being treated, as lepers. All of this doesn't promote early detection (which is the only way to try and stop this) and treatment and or the recognition of one's disability.

I do, I do feel like an outcast most of the time. A lot of diseases get prompt attention and RSD just doesn't. It is getting to be discriminating, esp. after all these years and when you see what is happening internationally: far far far more. At least, there's a certain level of respect there.

I have had to struggle for almost three years, in pain, years without treatment or medication, before doctors noticed my RSD. That means that more could be done. I am not complaining about my medical treatment at all, once I was diagnosed all that could be done was done, there is nothing to complain about.

It's just that I think there is a general need for separate recognition of this condition. People have told me of their own suffering before being diagnosed and their troubles from one doctor to the next (one recognizes it, one doesn't, one doesn't, one does and this goes on and on, one would be better flipping a coin) and that to me says there is an urgent need for this.

These days, due to my own frustration, I am almost repulsed by nationwide cancer campaigns. Not nice, but that's the way I feel. When is the focus going to shift to MS, Fibro, RSD? Because that is necessary too, maybe even more so, because those are non terminal diseases and the hope of finding a cure within someone's lifespan besides being essential, might be more realistic!