The Oprah Show (dis)Appointment

The Background:
A few months ago everyone that had anything to do with any community involving vulvodynia in anyway got an e-mail from the National Vulvodynia Association. It went something like this:

Oprah wants to do a show about vulvodynia. We're looking for women who are scared to get married or have kids due to it. Women of color of any age needed.

I'm sure thousands of people responded. I did not. There are multiple reasons for that.
Then another frenzy of e-mails came forward that were like this:

The vulvodynia Oprah show is taping this week. We're so excited

Time passed, the show was taped and we got some semi-reports about the show...which turned out to be less than expected:

The Oprah show was taped. Dr. Oz was on. The show was not just about vulvodynia, but it was a segment about it. Many of the women who volunteered and were there were not even questioned.

People were let down, but positive that things would be better even if it were just a segment. So then there was false hope that one particular week would be THE WEEK:

The Oprah show about vulvodynia is THIS Thursday. Tape it!

Turned out it wasn't this or that Thursday. It wasn't any day. Then this e-mail came around:

Turns out they aren't airing the vulvodynia segment at all this season. Instead it is slated to be aired, if at all in Fall 2008.

The frenzy was officially and unequivocally quashed.
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The Moral of the Story:
If there is anything that we have learned from this, it is that we have got to rely on our own community of support. Sure, it was great to learn that the all-powerful Oprah was interested in discussing vulvodynia. It was inspiring to see such a response from the vvd/vvs community. But at the same time, we can't stop there.

We must continue to tell our stories, not only about vulvodynia, but about all of these conditions faced by millions of women. This is the only way in which they will gain legitimacy in the wide world of public opinion--and sadly, even in the medical world. There are many doctors that have no clue how to diagnose or treat vulvodynia. And by many, I mean thousands...if not more.

Furthermore, we have to stop putting such high importance on things like a mention on Oprah. The fact is that while that segment might have helped many women, the continued creation of a community of support is more sustainable, more accessible and more in-depth than any blurb could be. Oprah surely would have opened a few minds, but if we aren't there to catch them afterwards, the knowledge is useless.

That's why I encourage comments and links to new blogs here. This isn't a women's issue, this is a human issue. These chronic illnesses that are so prevalent in our society have a connection to something that we must explore. More importantly, though, we need to create a community for people to use when they find out they have symptoms or even the hint of symptoms of one of these conditions.

Knowledge is power, but support is motivation. And knowledge without motivation is of no use to anyone.