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.

Dr. Oz, You Say?

Apparently, Dr. Oz, the Oprah-approved physician, has discussed PCOS on the Oprah show recently. (And this on the heels of a major announcement by the National Vulvodynia Association that Oprah would have a show--which then turned into just a segment--about vulvodynia.)

I'm glad that he's talking about it and all, don't get me wrong. It's just so glossed over that I doubt it really made an impact. Here's a description of it:

Another audience member said that she has facial hair on her chin and it really bothers her. She shaves her chin. If you don’t have regular periods and have a hard time losing weight she might have Poly Cystic Ovary Syndrome. PCOS can also cause infertility, and can pre-dispose the person to diabetes. They tend to have more heart attacks. She didn’t have all the symptoms of PCOS. There are treatments that can help to reverse PCOS and treat the condition. Dr. Oz said that you can shave and it won’t make it come in more. Dr. Oz said that you can take pills to regulate testosterone hormone levels. Birth control pills can be helpful sometimes he said. There are other medications that can help to control the hormones as well he continued to explain. He said that you shouldn’t ignore it. Dr. Oz said that there is a laser treatment that can get rid of the hairs permanently. Dr. Oz said that he doesn’t like plucking as much as the shaving. Plucking can cause little pimples. He said you can also use a waxing technique for facial hair removal.

Ugh. It saddens me that the main discussion is about hair removal. While that is an important symptom to recognize in PCOS women, it's not the most crucial element. So now one or both of two things will happen: (1) all women with excess facial hair will think they have PCOS, or (2) women with thinning hair or a lack of facial hair that can be so problematic with PCOS will neglect other PCOS symptoms.

Oprah, please do a full show on PCOS. I think the time has come.