Infertility: The Disease We Need to Start Talking About

Infertility: The Disease We Need to Start Talking About

Dina Roth PortHealth Writer, Speaker, and Author of Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions
Posted: February 9, 2011 07:38 AM

Silence might be golden in some circumstances, but in the case of infertility it has been downright destructive.

Recently RESOLVE, one of the only organizations dedicated to infertility, made a bold announcement on its website: "People with infertility are being ignored." I always knew that insurance coverage for treatments such as in vitro fertilization (IVF) is scant at best, and that many doctors still don't treat infertility as a major health issue. I've learned that blatant misconceptions persist when it comes to our reproductive health. And it's no secret that the media doesn't cover this subject as often as it should.

However, what I didn't realize is that infertility patients' reluctance to discuss their struggles and advocate for change is directly preventing those affected from getting the support and funding they deserve. As Barbara Collura, executive director of RESOLVE, explains, "Infertility is not being discussed in the general public health realm -- it's not taught in health classes, it's barely touched upon in medical schools, and it's not a priority of any government entity. Yet how can we expect health care providers, educators, our government, and insurance companies to pay attention to infertility when the patients themselves aren't even talking about it?"

Why the silence? People battling infertility are certainly not alone -- a staggering one in eight couples face it -- yet many feel like it is an extremely personal matter not to be shared with anyone but anonymous women and men on message boards. Some say they feel shame for not being able to procreate or for having faulty plumbing, so to speak. Also, in our somewhat still Puritanical society, we've been brought up to believe that sex is a private matter. Discussing it in some circles, even when it pertains to a medical condition, is taboo.

Of course, not everyone feels that way. For instance, while plenty of celebrities would never admit having gone through IVF (even when so many give birth to twins in their 40s), Giuliana Rancic has helped break the mold by publicly sharing her fertility battle via her reality show Giuliana & Bill. "We had signed on to do this show and when we started having trouble getting pregnant, we decided we were going to be honest and reveal what was really going on," says Rancic, who suffered a miscarriage last year after undergoing IVF treatments.

The result of her candidness was both surprising and inspiring. "I started getting up to 100 emails a day from people telling me that I helped them because hearing my story made them feel less alone and ashamed," Rancic explains. "I was shocked by the fact that so many people go through infertility because so few talk about it. And while experiencing it myself has been more difficult than I could have ever imagined, I've found there really is a comfort in numbers."

However, Rancic is still in the minority: It seems that for most men and women facing infertility, it's easier to deal with something so emotionally, physically, and financially draining without having to field questions and opinions from every well-meaning friend, co-worker, or family member. Such comments like "Just go on a vacation, relax, and you'll get pregnant," or "You can always adopt," are far too painful to even acknowledge, so people figure that by remaining silent they'll avoid opening themselves up to such commentary in the first place.

It doesn't help matters that there's no general consensus on how to label infertility. In 2009, the World Health Organization officially defined infertility as a disease. Yet many individuals, organizations, and insurance companies still say that having children is a lifestyle choice and that infertility is not a serious medical issue. Some even liken fertility treatments to cosmetic surgery. But ask the millions of couples desperately trying to get pregnant whether or not having children is a necessity. Why would they subject themselves to months or years of such turmoil if, to them, it weren't essential that they try?

Certainly, there are plenty of valid reasons while this secret exists, but it needs to end. Thirty years ago, breast cancer was where infertility is today -- women just didn't talk about it (a topic I touched upon in a recent blog post). There weren't countless support groups, fundraising walks, and an entire month enveloped in pink. Women battling breast cancer did so in silence and, in turn, many felt isolated and ignored. However, now because there is such an international dialogue about the disease, breast cancer receives multi-million-dollar grants each year in research funding and patients are inundated with an outpouring of support and understanding.

Other cancers, AIDS, and many other illnesses follow the same path from shame to global support and advocacy: Once people start talking about it, the awareness, funding, and answers follow. "The silence is one of the key reasons why the infertility movement is not where it should be," says Collura. "By people speaking out and letting the world know that these are real issues affecting real people, that would impact advocacy, public education, and public policy."

What will it take to bring infertility out of the closet, so to speak? Possibly it would help if more celebrities like Giuliana Rancic came forward and if the media started covering the topic more extensively (as SELF magazine did with a groundbreaking piece on the subject). Maybe we need thousands of infertility patients and advocates to come to Washington D.C. for their Advocacy Day on May 5th rather than a few hundred like in years past. Or perhaps we just need the domino effect -- once a few people experiencing infertility open up, more will follow suit.

I don't know what the magic ingredients are that will take infertility from an issue no one talks about to a banner "pink ribbon" type of cause. The bottom line is that far too many people are suffering. But by suffering in silence, the stigma persists and the advances we need to overcome infertility will never become a reality. As Collura points out, it starts with those struggling with infertility saying, "We matter."

And when they do, the rest of the world must start listening.