I think that you just hit the nail on the head. Another thing is that some people just don't, at this point, have anything (or know what) to say. While I've struggled for 5 years hunting down a diagnosis, it has been mere weeks that I've had a name for what is wrong with me. I'm still trying to figure out the ups, downs, heads and tails of this for me.

On top of that, I decided a week after my doctor told me CRPS to manage to whack my hand on my bad arm with a hammer. Now I'm losing the use of my hand, and where my arm was a pilot light to my leg's bonfire, my arm is now an out of control wildfire. Plus I'm trying to get my house ready and prepared for me because I have surgery scheduled in 1 1/2 weeks.

This may not be the only serious, life altering disease some of us have also. I was diagnosed with celiac 2 years ago. I'm very active in celiac communities providing the support to new people that I needed when I was new. I also spend a lot of time reading up on new research. (I have a whole new understanding of medical terminology from medical papers.) And I've spent time writing letters and emails to politicians and even the pope to try to change the world.

It took more than a year for me to feel I understood my celiac well enough to be an advocate. It isn't that I, or others, may not want to do something like this. A lot of people just may not feel ready besides all of Neurochic's good points.