Would You Tell Someone You Were Infertile?

There are a handful of celebrities who have been willing to divulge infertility issues, but if you didn’t succeed with pregnancy would you talk about it?

“Infertility,” my husband once observed, “is one of those topics you want to bury, and then bury the shovel.”

His perspective is hardly unique among those who have learned they are infertile or have had to confront an infertility diagnosis head on. The diagnosis packs a devastating punch and cuts to the very core of what it means to be a man or a woman. Not surprisingly, it also elicits a sense of shame.

Why? Partly it’s the taboo thing.

Sure you see plenty of breathless reporting about fertility treatment advances. The latest hard-won baby-making success stories with third party reproduction or in vitro fertilization (IVF) this past year came from TV talk show host Jimmy Fallon, actress Jaime King, and singer Sophie Hawkins. But missing from the popular media are narratives revealing a prevalent and less joyful outcome.

Today one in six couples seek treatment for infertility, and despite the breakthroughs in reproductive medicine trumpeted far and wide, the odds are low that IVF will succeed with a live birth.

In our society everybody loves a winner. Failure? Not so much. As a result, when Mother Nature and science find their limits on the conception front couples routinely find themselves at the end of a long, painful road without the social safety net and support that accompanies other devastating losses.

While the global fertility industry heralds the birth millions of babies born via IVF since 1978, it’s time we acknowledge and bear witness to the emotional tolls, traumas and risks associated with the millions more cycles that have resulted in failure over the last 37 years: 77 percent global failure rate in 2014 and nearly 70 percent in the United States in 2010.

“Infertility patients are as distressed as cancer patients,” Dr. Alice D. Domar explained in an interview. She should know. She has devoted much of her career to studying infertility and was involved with a survey conducted by GfK Roper Public Affairs for Schering Plough. The study found “women feel flawed and men feel inadequate” as a result of infertility. The results also reported that 54 percent of couples feel overwhelmed; 20 percent of couples have contemplated divorce.

“The numbers here point to a very dramatic psychological need,” she said. “These couples are very distressed.”

With no readily available support network, many go online to find understanding. Search any infertility forum and you’ll find pseudonyms shielding those who discuss their diagnoses and struggles.

“I have not seen a whole lot of progress in terms of people’s comfort level with disclosing the fact that they have infertility, and I’ve been in the field since 1987,” Dr. Domar added. Compounding the problem, most couples are not adequately counseled about how to manage the stress they’re under. They also can’t count on a receptive audience.

“One of the reasons a lot of people don’t talk about it [infertility] is that they’re going to open themselves up to insensitive or stupid comments,” Dr. Domar noted with more than a little exasperation. In fact, the survey found the majority of people had not told anybody that they were seeking help for infertility. “We need to educate the public as a whole about how to better support people who have infertility.”

Those who don’t succeed with treatment are left to cope not only with feelings of failure and heartbreak, but alienation. Contained within blogs and online forums are stories from women who feel, viscerally, the loss of their children. A woman who experienced five failed IVF cycles summed it up this way:

“Infertility and the loss of my children have altered me in ways still unfolding. New skill sets I never aspired to have, far reaching perspectives I never asked for, fragile wounds and vulnerabilities I did not invite that need to be tended to. While I try to own it all anyway, the alchemy of this seems to be vagueness.”

A study conducted at the University of California, San Francisco found women in the months after failed IVF were at greater risk of anxiety or depression. That the disenfranchised grief and loss lingers and lacks a conventional mourning ritual makes the healing and recovery process tricky. When embryos stop growing women undergo an ‘alpha pregnancy’ loss.

In a recent article on miscarriages in Mic, reporter Julie Zeilinger interviewed psychologist Dr. Jessica Zucker who explained, “women are rarely prepared for the deep psychological effects miscarrying can have.” About her own miscarriage, Zucker described it impacting “my understanding of my vulnerability, my mortality. For a time I was … deeply wounded by this reproductive catastrophe. This loss made an indelible impact on how I feel about my life more broadly.”

Ironically, today’s inadequate societal response is due in part to the perception that reproductive or fertility problems can easily be remedied through science. As a journal article, The Psychological Impact of Infertility, put it: “The medicalization of infertility has unwittingly led to a disregard for the emotional responses that couples experience, which include distress, loss of control, stigmatization, and a disruption in the developmental trajectory of adulthood.”

It doesn’t require much to reduce the stigma. A few ways to do so include understanding and acknowledging the limits of reproductive medicine, being willing to abide with those who have experienced infertility losses and acknowledging the trauma and complexity that such reproductive losses introduce.

Pamela Mahoney Tsigdinos is the author of the award-winning memoir Silent Sorority: A (Barren) Woman Gets Busy, Angry, Lost and Found and the soon to be published eBook, Finally Heard: A Silent Sorority Finds Its Voice.

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