Posted by Margi (18.104.22.168) on August 02, 2001 at 14:56:44:
In Reply to: Rebuttal to Paco's rant ... posted by Dave Emond on August 02, 2001 at 13:56:40:
(oh, how do I do this without perpetuating my Bitch label....? By posting a disclaimer that this is not directed at any one person in particular? It's really not)
Can't the friendship rings be exchanged at an email level? Do the genuine cluster headache sufferers and their supporters really GET anything out of hearing how Sally-Jane's chihuahua's bowel movements have improved over the last week? Or that Billy-Bob's cousin is going to be on Jerry Springer next week? And do we really need to know if Frederika's learned the meaning of a new word this week? I mean, I'm really GLAD that Fido's poop isn't as runny as it was last week, but I'd rather hear about it in email, thanks.
It's become a competition to see how many replies a 'poor me' post will get. Have we become a 'look at me, I've got it worse than anyone here and the dog ate my homework, I need attention!' venue? That's fine to some extent, though - those that don't want to participate in the love-ins and ego feasting don't have to, and you'll notice, usually don't.
What is so flagrantly wrong about that is that the genuine cluster-related questions and concerns are quickly moved down and eventually off the board because of the volume of responses the 'I've got a boo-boo' posts are getting, often going unanswered. And sometimes those people never come back. What happens to those folks? Do they go away thinking they stumbled onto a lonely heart's club and never DO find the answer they're looking for? Do they continue feeling (as we all did before we found this place) that they are still alone with their pain. That's just wrong.
Yes, I'm one of the worst instigators here of joking around and I do get carried away from time to time. I'm not saying anyone is singularily to blame or is totally blameless here.
Whether this site is separate of OUCH or not, OUCH was born here and will continue to be part of here. The two will always be co-dependant. And, yes, one of the original goals of OUCH was to be able to direct sufferers to find their individual relief, so hopefully a day will come that a newbie will post and an OUCHer can direct them to a Family Services Committee, or an apppropriate doc in their area. Again, this kind of counselling can be handled on a one-on-one basis through email, so that ch.com can remain a clearinghouse. It's kind of the lobby of OUCH if you will.
All I'm saying is that providing support for cluster headaches IS the 'fucking program', as Paco so succinctly put it, and with all the sidetracks and tangents that happen here, we're losing our focus again.
I, for one, definately think Paco is on the right track and said it very well.
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