Wednesday, February 9, 2011

Start Talking About Infertility

I got an e-mail from RESOLVE this morning that had a link to a great article on Infertility that appeared in the Huffington Post today. The article is called "Infertility" The Disease We Need to Start Talking About". I copied and pasted it here:

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.

There were a lot of things in this article that really hit home with me. How many times have I, and so many others, avoided talking about IF? How many times have I wished there was more media coverage about IF, but done nothing about it? I realize that IF is very private, but it really makes me wonder what changes could happen if that wasn't the case. I'm not saying that everyone needs to come out of the IF closet or spend all their time campaigning about IF...I just wonder if there was a little more talk or a little more effort, if things would eventually change.

Unfortunately, there were quite a few negative and insensitive comments posted after the article. Some people are so convinced that IF is not a health issue; simply a lifestyle choice and that it is nature's way of weeding out the population. Of course, these are the people that don't have any experience with just goes to show how much more education and coverage about IF is needed!


  1. Good post. Thanks for sharing this.

    Are you ready for tomorrow?????? It is tomorrow right? Your OB appt.

  2. Here, here!

    I agree that IF (and pregnancy loss) need more coverage. I keep telling myself that once I'm on the other side I'll start talking more. It's just way too painful right now to imagine having to deal with insensitive comments for me to be willing to open up yet.

    Thanks so much for posting this. Too bad about all the negative comments.

  3. I am so glad that you shared this and that this article was written in the first place. I strongly believe that people struggling with infertility do infertiles a disservice by keeping silent. We cannot expect a change if we don't talk about it. I take every opportunity to tell people we conceived through IVF.

  4. Great article. But those ignorant comments are the reason so many people don't share more. Can you imagine if someone said those things to your face? People would never say those things to cancer patients (a real disease to most people). Also, I think IF is often times wrapped up in a sense of failure, which isn't the case with most diseases. And that makes it hard to talk about.

  5. Thank you for sharing that article. I'm hesitant to read the comments, because I know it will just make me angry.

  6. Thanks for posting this! I read the article and thought it was so well written. Hope you are doing well! IF can be hard to talk about, but awareness needs to be raised for sure. Take care

  7. Great article. Thanks for posting it!