Posted by Margi (24.64.69.110) on December 05, 1999 at 23:15:59:
In Reply to: Directing the misguided and uncomprehending. posted by Donna on December 05, 1999 at 22:34:36:
I remember our own sense of elation and excitement when we first found ch.com too - that's a really good point. We DO forget that some of these people are in desperate pain and many of them have been incorrectly diagnosed by their docs, thinking they finally have a name to assign to their pain.
Mike and I were amazed that there were other people who go through what we do, from a sufferer and a supporter viewpoint. For so many years we had fought alone, believed doctors when they told us he had yet another sinus infection, etc., etc.
I actually think that although somewhat lengthy, the replies to Ralphyboy were productive. He is suffering. He is in pain. He is just not in cluster pain and I think he must realize that by now. There are so many cluster-educated people here now that he has been given some pretty darned good info to take back to his doc (or to another one) and keep working on a diagnosis. What mushroomed after Ralphyboy's post was a religious tangent that really wasn't even part of his "question", so I think the purpose was served and he got his answer
I do think, however, that the Welcome Page IS very well written as it stands. I just don't think people are taking the time to read it - just jumping in with both feet to the message board, desperately seeking immediate gratification and support without being certain of their illness.
So how do we get new visitors to actually READ that page, take the quiz, read the traits, qualify or disqualify themselves......
Good post, Donna and thank you for your kind words.
WWW
Margi