"It's Just Not Affecting the 'Right' People?"
Of all the things to provide me inspiration, I was reading “The Venetian Betrayal” by Steve Berry recently. His books of international intrigue, which usually surround the Eastern European block, Rome and The Vatican, have kept me enthralled for the better part of the past year.
In “The Venetian Betrayal,” there is a fictional plot that the leader of a new Eastern European-block federation (through a less-than-legal partnership) has found a cure for HIV and AIDS. A discussion on page 319 of the hardback edition of the book reviews the fights between pharmaceutical companies and the world’s perspective on AIDS. It follows:
“It didn’t matter to you that people were dying by the millions?
And you think the world cares about AIDS? Get real, Grant. Lots of talk, little action. It’s a unique disease. The perception is that it mainly kills blacks, gays, and drug users. The whole epidemic has rolled back a big rotting log and reveald all the squirming life underneath — the main themes of our existence — sex, death, power, money, love, hate, pain. In nearly every way that AIDS has been conceptualized, imagined, researched, and financed, it’s become the most political of diseases.
And what Karyn Walde said earlier came to mind. It’s just not killing the right people (emphasis in book).”
This interaction in the book really made me stop and think. It made me search around in my bedroom, where I do most of my fiction reading, for something to mark this page so I could continue on with the plot but not forget about the passage. What did this all make me stop and think about? Polycystic ovarian syndrome, its awareness, it’s image as a disease, and its impacts (many though they are). Let me break down my thoughts and connect PCOS to this book’s passage.
Does the world care about PCOS? — I think this is an incredibly relevant question, especially after considering what my philanthropy and public relations students have said about fundraising for chronic and terminal illnesses like breast cancer, heart disease, etc. versus PCOS. Those of us who are afflicted by PCOS, who deal with its symptoms every day, do care about the syndrome. While there is a large-ish chunk of the female population that faces PCOS daily, what makes the rest of the world care about it? It’s a niched issue. I’ve often wondered if it’s too niched. Is there lots of talk but little action? I don’t think so. The plethora of grassroots and larger organized groups, blogs (like this one), information portals (like SoulCysters, etc.), and so-on and so-forth tells me there’s a lot of talk and a LOT of action. But let’s be truthful about that action. It’s all on the patient side. Are we not doing it right? Are we not doing enough to propel the syndrome, in the medical and related professions eyes, to launch us from something that may have a standard diagnostic criteria to the forefront? In more than one interview I’ve done for PCOS Today, I’ve had medical professionals tell me that while there may be a standard diagnostic criteria for PCOS, it’s not used effectively (meaning not everyone either a) knows about it or b) actually uses it if they do know about it). With that information, can we even say there’s a true medical standard for the syndrome, or is it just some anomolous medical cloud out there that is merely being swatted at but not completely grasped?
Has PCOS ‘rolled back a big rotting log and revealed all the squirming life underneath?” — Why did the original statement (see above) speak to me? I think it’s because I feel that the issues related to PCOS, and especially the infertility rampant due to the syndrome, are treated as tertiary, as a choice almost…perhaps even considered not important to everyday life. But at the same time, I’m a little amazed at my own thoughts. All the research to-date about PCOS has taught us about the secondary issues that can (and usually do) plague those with PCOS - the heightened potential for heart disease, stroke, endometrial cancer - never mind the fact that women struggle to conceive just to start a family. While some of us (me included) have made an active choice not to have children (for various and asundary personal reasons), what about those who badly want children but can’t have them? Are these secondary (yet incredibly debilitating) health issues and the infertility crisis just not considered that important? If so, then I’d say we’ve become an incredibly cynical society. We’ve become so jaded that the impact of a syndrome (a collection of diseases, as it’s been called) means nothing. Are we just not putting the face on PCOS that we should? Does the world need to see the ugliness of the syndrome to really understand its affects? At this point, it’s not “the most political of diseases.”
I wish I had the magical answers to these questions. What is it going to take for PCOS to get the recognition it needs to be top-of-mind? I’m sure this question is going to plague me for the rest of my days.