Thursday, February 15, 2007
Online Groups
Those groups are a puzzlement to me. They do some good. They start some nice friendships. On the other side, they pump out a lot of misinformation. Disinformation, too, which is worse. And whether they are about a terrible medical condition or just some special interest or hobby thing, they always seem to degenerate into vicious personal attacks.
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Beg to differ with the categorical statement. I started a Yahoo group for women with difficulties stemming from malformed uteri. It's been almost 7 years and the thing has something like 2,500 members. We have a FAQ with basic information, and some boilerplate about controversial (controversial, esoteric, and very important) issues in the treatment of some of these problems, many friendships and almost no flamewars.
ReplyDeleteThe worst problem (imho) was a lot of women talking about issues that were halfway off-topic, so we branched off into two more groups: one for socializing and one for women concerned with trying to conceive. Problem solved.
I started it because I couldn't find much information or support on the net back when I was diagnosed, and I am very proud that I started what has become a very sane clearinghouse for information on an uncommon--but not rare--problem. And it is helping women inform themselves and become proactive. The answer I heard from my doctor, when first diagnosed, which was "Keep trying--one is bound to make it to the age of viability," is less common these days as women seek simple surgery and monitoring to prevent that kind of waste of lives.
And personally it was a major crutch for me as I went through surgery, conceived, miscarried, then successfully had my son. What a boost to have dozens of women chip in a buy the baby a gift--a beautiful magnolia bush.
As a success story yourself in your own esoteric support groups, you know how validating it is to be able to offer hope to someone who is suffering, or how essential it is to talk to people who truly understand. I think that's worth celebrating, not dismissing.