Let’s Break the Taboo of Infertility

No disease in human history has inspired as much merchandise as breast cancer. During Breast Cancer Awareness Month every October, consumers can choose among a wide variety of pink or pink-ribboned products, including watches, water bottles, wallets and other items that may actually increase your risk of getting cancer.

Pink everything, as well as very legitimate complaints about the effectiveness of the message behind pink everything, represent a major, and relatively recent, shift in how we talk about the disease. Up until the late 20th century, breast cancer was something that was not discussed, let alone marched for or lipstickified. Not coincidentally, it was largely under-researched and undertreated, too.

“People didn’t talk about it then. And I think that’s probably the most global thing that I can say about having breast cancer in 1979. People. Didn’t. Talk. About it. Period,” a woman named Clara, who was treated for breast cancer during this time, explained to Maren Klawiter, author of the 2008 book The Biopolitics of Breast Cancer: Changing Cultures of Disease and Activism.

How did things change? “[P]ublic revelations from individual women, which was followed by the development of support groups and ultimately the formation of political activist groups with various priorities,” according to a 2012 paper in the Journal of Women’s Health. Today we would find it strange if a friend or relative kept her breast cancer a secret, and worry if she felt shame over being diagnosed with what is a common, and openly discussed, medical condition.

Infertility could come out of the shadows, just liked breast cancer did in the 1970s, through the might of our personal stories. We, too, can kick to the curb the taboo surrounding infertility by the act of talking about it. (And who knows, maybe one day we’ll even get a branded lipstick to call our own.)

We, too, can kick to the curb the taboo surrounding infertility by the act of talking about it.

The secrecy shrouding infertility makes what is already an emotionally-, financially-, and physically demanding process even harder. It helps perpetuate the aura of shame and denies those of us going through the very necessary release valve of kvetching about the treatment that – yes!, we know – we are very lucky to be receiving. The secrecy and shame also help perpetuate the misconception that infertility is somehow more of a lifestyle choice than a medical condition that just like any other medical condition is worthy of insurance coverage.

Most of us can’t contribute scientific or legal advances to infertility treatments, but we are quite capable of chipping away at the stigma surrounding it—with words.

Over the past year, as I went through IVF and miscarriage, I’ve tried to bring it up as often as possible. Whenever friends or relatives inquired whether we wanted more children or asked how I was doing (in circumstances in which I could tell they really wanted to know and weren’t asking as a salutation), I would tell them.

Yes, I would often receive frozen, fearful stares when I brought it up—faces that are the product of a culture in which people rarely hear someone casually bring up infertility and have no idea how to respond to it. I didn’t let the silence stop me. I’d keep talking, often focusing on one aspect of the experience, such as how I lost my needle fear or how pre-implantation genetic screening works, depending on my audience. More times than not, this worked to diffuse any awkwardness.

Other times I would tell my fuller infertility story: I had no problem getting pregnant with my now four-year-old son. I was the kind of woman that infertile women just love to hear about, the kind who stumbled her way to a positive pregnancy test. We had been casually trying for three months, no heavy duty monitoring, when I decided to take a break. I had a mid-winter, four-day trip planned to Miami, which fell right in the middle of my cycle. No precautions were taken that month, nor was much sex had. I got pregnant anyway.

When we decided we wanted to do it again two and half years later, I was very chill. For six months we had a lot of sex around the middle of the month and assumed it would work. When it didn’t, we started monitoring my cycle, and began to experience first-hand the inverse relationship between carefully timed sex and sexual pleasure. After another three months, we made an appointment with a reproductive endocrinologist. Two IUIs, one month of Clomid, one egg retrieval, two separate blastocyst transfers (one of which ended in a miscarriage), and many months of waiting in between, and we got pregnant. I am in my second trimester now and I still don’t feel like I have passed the finish line. That precariousness I felt for so long is still in me; any unusual sensation in or near my uterus still continues to inspire the thought “this could very well not be.”

People love conception stories, and the sharing of one’s own tends to beget sharing by others. Once I started talking freely about mine, I began to hear about everyone else’s IUIs, miscarriages, and IVF experiences. Then there is the large group of people who had difficult labors, or whose newborns had to go to the NICU shortly after birth. Few among us walk along a smooth road when it comes to making and having babies. Very few. Nevertheless, we remain so reluctant to discuss these experiences.

There are plenty of us out there who want to talk about it, perhaps even yearn to talk about it, if only we felt that was all right.

I understand that there are many of you who don’t want to talk about it. Who feel that such matters are private, or that such self-exposure will only heighten the pain. If that’s the case, then, yes, of course, you shouldn’t feel obligated to share your experience. But based on the response I’ve received from writing about and discussing infertility, unbidden, for some time now, I’ve come to believe that there are plenty of us out there who want to talk about it, perhaps even yearn to talk about it, if only we felt that was all right. Well, it’s up to us to make it all right. It’s up to us to talk, cry, and laugh about it with others. It’s up to us to treat it as the common and complicated part of the human experience that it very much is. We number 7.5 million, or over 12 percent of all women in the United States. We aren’t alone.


Elissa Strauss
Contributor

Elissa Strauss

Elissa Strauss writes about parenthood for Slate. Her work has appeared in the New York Times, Elle and Longreads. She was diagnosed with secondary unexplained infertility in 2015, and got pregnant through IVF in July of 2016. She is no longer afraid of needles.


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