Posted by Tracy (220.127.116.11) on May 23, 2000 at 06:20:33:
In Reply to: Important message to all posters posted by pinksharkmark on May 23, 2000 at 02:31:43:
but I remember someone posting a few weeks back something similar to this. The response from another poster was along the lines of that the information regarding treatments has dried up, symptoms have been dissected to death. However, the PEOPLE that post here who SUFFER from ch do have genuine problems. They have personal, work and ch related problems to deal with on a daily basis. What are we supposed to do - tell them to get lost unless they ONLY want to speak about ch?
I think that whilst I accept the points you're making, I don't see why we should ignore those that have problems just in CASE a few professional people want to come by and STUDY us and our board.
How would you feel if someone is feeling suicidal and is too frightened to post here in case they get told off - and ends up offing themselves? I'm not being melodramatic you just ask people here how many of them have considered suicide....I know I have - and recently too. if it hadn't been for Jonny and Margi (and a lot of others too) I dread to think what would have happened. The problems I had were not just ch related either, in fact a lot of them were personal. Things that, under your 'new' system, means that I wouldn't have been allowed to post.
You say e-mail. So say I'd e-mailed someone with that situation and they were out. and I'd done the 'deed', how would that have made that person feel? To come back and find that e-mail and then I hear that I'd done it. With the board there is ALWAYS someone around to offer support, or a kick in the pants (depending if sympathy or a good shake is what's needed).
You HAVE to think these ideas through. This site is for CH sufferers and their carers. NOT the professionals. If they don't like what they see....tough! Trust me, it wont change their minds a jot anyway.
My gp doesn't care about the pain I suffer, and coming to this board wouldn't make him change that opinion and suddenly rush to help me. The docs that care, care because they don't want to see a patient in pain regardless of the cause (ie Prof. Goadsby and his team).
What would someone like CarlD do? This is the only place he can come where people understand what he's going through (with his other, more personal, problems too). He said just the other day, that he bumped into a friend who asked how he was doing, when he told him the guy left pretty sharpish. If he couldn't post here, what then?
If the professionals TRULY want to find out about CH, there's plenty of info about it on this board elsewhere (thanks DJ!).
I'm NOT flaming you, I just don't think you've thought your arguement through. And, to be honest, I wouldn't hold your breath waiting for your 'changes' to be acted on. They won't be. I have learnt a valuable lesson here.....we are SURVIVORS. But we survive because we have each other for support. No matter WHAT our problems are. Period.
Take care and God bless,
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