For most of us, the ability to procreate seems a given, whether we plan to act on it or not, and when we think something is a given, we take it lightly. On April 24th, National Infertility Awareness Week (#NIAW) begins, and people like me will be shouting from Internet rooftops about our most intimate failures in our attempts to have a child. Why would we go public about such private matters, and why does “awareness” matter? That term is thrown around a lot, especially on social media, where we are all subjected daily to perfect strangers spilling their guts for vanity or attention rather than for the public good.
But here’s why you should pay attention during NIAW. Over 7 million Americans are unable to naturally conceive or carry a baby to term, and the majority of them feel vulnerable, isolated, and alone. Chances are you know someone who is struggling with infertility, but you may have no idea how hard it really is for them. Infertility is usually kept secret; it’s about sex, it’s about loss and failure, and bottom line is, it’s a drag. So it’s no surprise that people aren’t clamoring to speak out about it. When we do speak out about it, more often than not, well-meaning friends and family want to solve the problem with quick advice, which only makes matters worse: “Why don’t you just adopt?” and “You just need to relax!” or “Maybe it’s time to move on” are the most common responses. (Here’s a useful guide from our friends at RESOLVE: The National Infertility Association for those of you wondering, well, what the heck am I supposed to say, and why don't they just adopt?)
Recently, celebrities like Tyra Banks and Chrissy Teigen have been outspoken about their infertility struggles, sometimes at their own peril. Tired of being publicly prodded as to why they didn't have children, Teigen and Banks “outed” themselves on live television, urging people to “stop asking,” the implication being that the people asking had zero awareness and therefore no sensitivity to the pain these two women endured in their attempts to build a family. I am grateful for their courage in bringing visibility to the issue, but I fear the #StopAsking campaign may give the impression that silence is the solution, and that couldn’t be farther from the truth.
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For the last two years I have been filming a documentary with couples from all across the country who “came out” about their infertility in hopes of winning a contest. Unlike Teigen and Banks, who have the financial means to pursue any path to parenthood that they choose, the people in my film don’t have that same privilege, and they believe that this social media contest is their best hope at having a family. Baring their souls online, they compete for a free round of in vitro fertilization worth thousands of dollars, a procedure most insurance companies do not cover. Critics see this contest as an exploitative marketing ploy, but to my surprise most of the contestants said it was cathartic to “out” themselves, and that their videos helped educate the people closest to them about the reality of their condition. The film, HAVEABABY, premieres at the Tribeca Film Festival on Thursday night, so I’m putting my subjects’ courage to the ultimate test. And, as I promised them, I am “outing” myself, too, now that the film is being released.
Over the last three years, my husband and I have struggled with our own infertility issues, during which he was diagnosed with testicular cancer. I was shocked by my ignorance about my own fertility, and bowled over by the financial and emotional costs of treatment. California, like the majority of the United States, does not mandate infertility health care coverage, even for cancer patients, so our costs were 100 percent out of pocket. It felt like the doctor took over our bedroom and our savings account all at once, and it put an incredible strain on our marriage. Thankfully, my husband’s cancer was treatable, and is in remission. I wish I could say the same about our infertility.
In researching possible financial solutions to our own situation, I came across Sher Fertility’s “I Believe” video journal contest. This competition struck me as a perfectly absurd distillation of the overwhelming world of reproductive medicine in which I now found myself. I knew right away that this was a film I had to make. Working on the project, I’ve met people from diverse racial, cultural, and religious backgrounds who have mortgaged their homes, taken second jobs, moved in with their parents, and even sold livestock in order to pursue medical treatment for their infertility. The one thing we all share is the feeling that this condition is not taken seriously and is often misunderstood.
Many other developed countries consider infertility a legitimate medical condition and offer some level of insurance coverage for IVF, but most American health insurance companies don’t view having a child as a medical necessity, and many won’t even cover testing in search of a diagnosis. At worst, reproductive medicine is seen as a luxury in our culture, a selfish and elective procedure much like plastic surgery, for a stereotypically wealthy patient who waited too long to have children. Never mind that the World Health Organization classified infertility as a legitimate disease in 2009. Looking back on my past insurance claims, I found it noteworthy that multiple knee surgeries to support my amateur athletic pursuits were never audited as a questionable lifestyle choice, but somehow my choice to conceive a child was.
Having dealt with both cancer and infertility in the same stretch, it was a striking comparison for me how supported we felt around the one, and how alone we felt in the other. But just a generation ago, there was a culture of secrecy around cancer, too. Cultural awareness about cancer has grown in leaps and bounds in the last twenty years precisely because people started speaking about it, thanks in part to social media and the Internet. Celebrities spoke out, and average Americans spoke out. Thankfully, there are now vast support networks for cancer patients, and some day, we may even find a cure.
I suspect there may be no “cure” for infertility, but even a small dose of education around this too-often taboo subject could help protect other couples from the grief that my husband and I have faced. Because I took my fertility for granted, when I made the choice to have a family—which was a very hard choice for me to make, and took longer than I expected—I thought the hard part was done. We never had reason to suspect a medical problem, and by the time it was diagnosed, we had to deal with “advanced maternal age” on top of a plummeting sperm count. After several attempts, I got pregnant for the first time last year, and when we heard our first fetal heartbeat, we held our breath, ever hopeful. Unfortunately, at 10 weeks, I had a miscarriage. My husband and I have never experienced a loss this profound, and we still have not completely recovered. There’s no advice or easy fix for this, we just need time to heal, and we will find our own resolution when we are ready.
While I can’t control my fertility, I can use my skills as a filmmaker to try to give voice to the experience of infertile people, and thereby help raise the critical awareness this community needs in order to move the needle on a biased system. The point of speaking out, during NIAW and beyond, is not to complain or get attention, but to try to transform our suffering into some kind of meaningful change, and awareness is the first step in any cultural shift. By humanizing the individual struggles of men and women with a medical need who choose to build a family through IVF but cannot afford it, my goal is to ignite a conversation about the flipside of reproductive choice: the choice to have a child.
