Posted by ScottL (207.229.173.56) on August 07, 1999 at 01:16:01:
I have visited this site since the early days, occasionally posting, but most often reading with great interest about others' symptoms, frustrations, and medical interventions. Whether cliques have formed at this site or not is a matter of perception and definition. Regardless, I have seen the message board change to a format that has a lot less information to educate CH sufferers and supporters and a lot more "chat". In and of itself, this is neither good nor bad. In fact, a number of persons seem to have formed bonds they treasure at a time when they really need the support. However, the affect on me, and I imagine others, is that I visit less often, knowing the sheer volume of postings and the likelihood that I will find information that will help me in my efforts to control my CHs.
If the mission is the reach as many people as possible, more "chat" could be handled through email and less as back-and-forth posting. I realize that many describe this as their "family" and have visited each other and become quite close. Great, but also intimidating to many. Put yourself in the place of a lonely CH sufferer reading about people meeting for dinner and supporting each other through episodes of CH. I'm not saying don't post it. I am suggesting that everyone be open to and mindfull of those on the "outside". Regardless of how the dynamic is established, it is almost inevitable that it is. It is also inevitable that those on the "outside", even if primarily through their own perception, need as much caring and support as anyone, maybe more. I was a teacher for a long time, and I learned that the most needy students were often the most quiet.
Only observations and suggestions, no judgement from me. I admire many of you and the shared experiences at this site have helped me greatly. Thanks.