Posted by Bennie Sue (63.11.65.206) on September 15, 2000 at 03:45:25:
In Reply to: If you're looking for ch.com... posted by Simon on September 14, 2000 at 20:17:48:
what can we do besides joining OUCH to let others know about CH?
We can direct friends and relatives to the support site ( assuming it returns to its former glory ) and let them read true accounts of people with CH and how it affects their lives.
I cannot fault anyone who does not comprehend fully what chronic CH feels like. Since I have had a few really bad attacks I know what a high level attack feels like - but I can in no way imagine how a chronic sufferer manages to keep going.
I have tremendous admiration for others who survive this without effective abortives. I just want to cry my heart out when I think of someone constantly in agony from CH. I can imagine it partially but not fully because I
have never experienced this intensity, frequency, or duration myself.
And I do believe there are many good doctors who have not had much experience treating CH,who might benefit a lot from reading the guest book or the message board. However, I still say I would be ashamed for a visitor (medical or casual reader) to find only garbage here. It defeats one purpose of the MB - that of education.
To present a true picture of us to anyone else, we need to keep the humor and art and positive personal responses. The whole idea of a support site is to befriend others with the same affliction, and generally we do that pretty well.