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.
Dina Roth Port, a freelance writer for publications such as Glamour, Parenting, and Prevention, is author of Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions. Visit her website at www.dinarothport.com.
Follow Dina Roth Port on Twitter: www.twitter.com/dinarothport
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There are some of us out there talking about infertiltiy at a grass roots level. I made February
"The F Word" month (F as in Fertility) on my blog. http://wp.me/pMefj-49
I was hoping to connect with people through sharing my personal experiences of miscarriages and infertility.
Thank you for speaking about it on a larger platform.
As more people like you come forward, we'll hopefully start seeing more advocacy, funding, and attention for the millions of people out there suffering.
I do hope that the author plans to continue to post on this topic rather than treating it as a one time interesting topic du jour-many people are impacted by infertility, the costs, the emotional trauma, and the damage it does to self esteem and relationships.
As a health writer, I don't view infertility as a one-time topic. We clearly need to make some changes, and I'll do what I can to help. Thank you for your response.
It makes me so angry when people who are able to conceive children without assistance suggest adoption so flippantly because there are "children in need". If you feel so strongly about it then maybe instead of having your own children, you should go and adopt. Don't get me wrong, I think adoption can be a wonderful thing, my husband is adopted...but it wasn't for us and I hate when people assume it is for everyone that is infertile or they are being selfish. It is so hurtful.
I'm rather candid about my history with infertility and try to reach out to others, but this isn't typical. Reasons for infertility are split 50:50 between men & women but i feel men often take it as an affront to their manhood when the reason is due to their "swimmers".
For infertile women, it can be hard to hear of friends and coworkers gushing with excitement over their pregnancies, baby showers, and such. In the infertile world, one of the worst things you can say to a woman with recurrent miscarriages or implantation failures is to "just relax" or "just adopt", but this is often the (misplaced) advise we get. Very few choose to adopt their first child so please don't assume that an adopted child cures the urge for your own.
Because of these insensitive comments by unknowingly well-intentioned friends & family, many choose to keep their infertility a secret rather than share it and be heaped upon with advise (aka: "assvice") from the fertile masses. Women are also hesitant to talk about infertility in the workforce because of the fear that management will assume an "attempt" at IVF or IUI guarantees a worker on maternity leave. Few realize the odds are for success is low with
Monika M. Woolsey, MS, RD
www.incyst.com
the contexts in which we discuss infertility, sadly, are limited. let's talk about it in context of money, or as a social issue; let's group all infertiles together. let's keep it black and white and simple. then we can solve it. or dismiss it. when you think about what infertility is - the inability to procreate, to carry or contribute to a new living being... it's not something we can simplify, and it affects people to the core of their being. and whether it is a disease or symptom of disease, like any other unique personal concern, it should be handled with tenderness. If you don't know what to say or ask, it's ok to say that. showing that you care, that you notice... and being available and willing to hear what my experience is, is a great first step.
I personally have never successfully conceived YET so I cannot speak from personal experience however since I do often talk with others who have battled whatever fertility issues one thing I have learned that may be of help to others especially those who have miscarried.
I have witnessed this and I believe it often gets forgotten by the OB/GYN or even the RE - a baby asprin a day sometimes is all one needs to being successfully in carrying a pregnancy. Many of us have clotting issues with our blood that although you wouldn't know it may actually prevent a fetus from receiving a proper blood supply and eventually the body then aborts.
I am NOT a Dr. and DO NOT claim this to be an answer for anyone, however I would like EVERYONE to be aware of it for their own sake and just be sure to discuss it with your medical provider since it is very often overlooked.
I wish you health and happiness. And I hope you find a way to share your story with others....I'm sure that when you do you'll find a lot of love and support out there!
And it's important that the doc be the one to prescribe this OTC med for it can also be an issue if not needed (just adding this fact since some may start to take when its not needed).
This is something that should be discussed with the Dr. before starting. I just think it very important to share since it is very often overlooked.
This was one of the many things I have learned of the course of the years via various differenty Dr. visits and one that my Hematologist made me aware of.
and doctors who are in the know are very perplexed !
Adoption is ridiculously expensive and with the open/quasi-open adoptions of today, few birth mothers will pick older couples, single women, or couples that aren't a "cookie cutter" family with children of their own. Many countries are also tightening up adoptions to US citizens. It's just not that easy to adopt. I've also heard of many heartaches by intended parents (IPs) where they've "thought' that a birth mother had agreed to relinquish the child to them, only to have her change her mind right after the birth. It can be heartbreaking for the IPs.
Maybe we need a celebrity or politician to lead the charge? I don't know. I DO know that this dialogue has to continue...