Posted by Barbara D. (152.163.195.202) on July 20, 1999 at 09:24:48:
I have been reading for days opinions of this board and feel now I'm ready to respond. Bear with me - this could get long.
Some of you have said that you were insulted and won't come back if that's the way it's gonna be. Well, I read the "supposed" insults and really can't see what upset most of you. Someone disagreed with you? This site has become a "family" site to most of us who have been here a while and yes, we disagree and poke jokes at each other, but NOTHING is meant to be taken personal.
For years, most of us have thought we were the only ones who had this awful affliction - now we know there are others around the world who suffer as we do. This site was started by DJ so we could come together and talk about this malady to someone who "understood" what we were going through. And yes, we have some folks who come here and don't have this affliction and don't know what the heck they're talking about, but instead of bashing them, we need to learn a little tolerance.
Some of you have said you'd be ashamed for your doctor to read some of these posts. Why? It might give them some insight into how desperate we get. How depressed we are and how CH effects us. My gosh, in the midst of a 10+, I've told everyone I know to go to hell and not in a nice way. I'm not a nice person when I'm hurting. I'm not reasonable and I don't care about anything but getting rid of this awful pain. I'm very self-centered and NOBODY can hurt as bad as I do during a full-blown 10! Sound familiar to anyone?
The one thing we all have in common is Cluster Headaches. Beyond that, we all come from different cultures, have different values, different lifestyles and different religious beliefs. And we have different things that tick us off! We talk about suicide which some people find offensive, but anyone who suffers from CH has at one time or another THOUGHT about it. It IS a big problem with our illness and should not be taken lightly. Why shouldn't we discuss it - get it out in the open and let everyone know (especially our doctors) how we feel.
What I'm trying to get at is we all need to take a deep breath and think about what we're accomplishing here. We finally have a support group - a family - where we can say anything we want. But when you really feel like cutting someone down to size, PLEASE send it in an e-mail to me, Kip or Bob P. We're all old enough NOT to take put downs personally. Or if you think you have to post on the board, talk to us - we DO understand the frustrations and won't condem or bash you for doing it. Sometimes you just have to get stuff off your chest.
Now I know everyone is not going to agree with me (and if you did - who would I have to argue with?) But let's start agreeing to disagree like big boys and girls and quit the snipping at each other. This is OUR support for Cluster Headaches. Let's keep it that way.
Hugs BD