When I learned about Hadassah’s reConceiving Infertility initiative to decrease stigma around infertility by sharing people’s personal journeys and helping people access treatment, I felt compelled to share my story with Thrive Global readers.
A couple gets married and then *boom* a baby. Not until recently did shows like “This is Us” depict the gory details of the IVF process. With so little representation and few people sharing their stories, why would anyone think they might fall into the 15% of couples worldwide challenged by infertility? I say couples and not women, because men play an equal role in infertility.
Some of the earliest stories in the Torah show our matriarchs struggle with infertility. In some ways this feels very progressive that our ancient texts address these private struggles, to show future generations, you are not alone. Even if no one talks about this, others have struggled in similar ways. Yet, it is also deeply frustrating that even these stories place infertility exclusively on the women. Where is the story of the shared infertility challenge for both the woman AND the man? Well, it may not be biblical, but here is ours.
I always thought that there was a chance that I would struggle with infertility, yet, I had never considered this something WE would deal with. My first clue was that my period was irregular from the beginning. I would go months without a visit from Aunty Flo. When I was finally diagnosed with Polycystic Ovarian Syndrome (PCOS) when I was 20, the doctor shared that for some, PCOS could result in infertility, but, as my case was only mild, the likelihood was that it would only have a minimal impact. In the meantime, she placed me on birth control to regulate my period, a common treatment for PCOS.
I think a lot about the ironies of hindsight. Up until that point, the vast majority of my peers were focusing on how to NOT get pregnant. My university’s Student Sexuality Information Services came to our freshman dorm to teach about the wonders of hormonal and barrier contraceptives, instilling a false notion that we were all super fertile. It never occurred to me that these methods might be unnecessary (aside from protection from STIs). This thought came to me as I stared down at yet another negative pregnancy test, about a year after my husband and I started trying to get pregnant.
When we got married five years ago, we knew that our fertility process might take longer than average. We started trying around our one-year anniversary. I found an OBGYN in our new community, and immediately disclosed my medical history. She insisted on a full workup to confirm my PCOS diagnosis, specifically to prove my inconsistent periods; this process took approximately six months. I dutifully documented bleeding and attempted to track ovulation in various apps. After six months, unsurprisingly, the doctor diagnosed me with PCOS again and immediately began me on a common female infertility treatment.
However, I had an internal sense that something was off. She prescribed the medications but never inquired about the results. Had it been effective? Was it successful in helping me ovulate? Who knew! Each month I called her office to ask for next steps, and a staff member would relay a message to continue with the medication. 85% of couples get pregnant within their first year of trying and for a year, we hoped we would be one of those couples. Yet, month-after-month, we received advice akin to shrugged shoulders. We were young. What’s another month in the span of a lifetime?
At around a year, we sought out a fertility specialist. Yes, we were young, but we were ready and did not want to waste more time. The fertility specialist was shocked to hear that a doctor had prescribed medications and never required blood work to determine the efficacy of the treatment. She immediately prescribed a battery of tests including testing for my husband. Something didn’t seem right. The medication should have been effective, and she needed to know more. We laughed. Clearly, I was the one with the issue. I had a diagnosis already that proved it!
And then we got a call that changed everything. My husband’s lab work indicated he too had a contributing factor to our infertility. He met with a urologist who recommended a corrective surgery. We would need to wait a few months until the surgery, and recovery would take approximately six months to determine if it was effective.
More time.
None of this is openly discussed around most dinner tables. And for the first year, my husband and I were private about our experiences. I even left a job that could not accommodate my doctor visits so as not to have to disclose our process and our struggles.
I was angry. I was angry at the doctor who wasted my time for months by treating only me and not looking at our journey as a package deal. I was angry at a society that perpetuates the narrative of fertility as a woman’s issue when, in reality, causes of infertility are attributed a third of the time to the female partner, a third to the male partner, and a thirdto both. I was angry when well-meaning friends would say, “You are going to make such great parents, when are you guys going to have babies already?!”
This was a WE issue. This was no longer about me; this was about us. We found that the more honest we were about our struggles, the more people responded with love and support. We uncovered close friends who had been simultaneously fighting the same unspoken and lonely battle. Others appreciated the opportunity to learn more. As Rabbi and Rebbetzin (or Rebecca-tzin, as I was nicknamed), our lives were already on display, so we leaned in. We had often joked that if we lived even a century ago, we would be the barren rabbinic couple, looked upon with pity. But modern medicine provided us with diagnoses, options and interventions. We spoke from the bima to share our experiences and opened the conversation for our congregation toward ending infertility stigma and educating our community. Congregants, who had never previously opened up about their stories, approached us to share their own challenges, and those of their children. We swapped treatment plans and kept track of each other’s treatment dates. Not a single friend, family member, congregant or colleague rebuffed our openness.
In some ways this diagnosis allowed us to forge forward together with a newly-discovered strength. We both required blood tests, procedures and time off work. You cannot passively treat infertility. Fertility treatments are an active process, a time period during which a couple is undergoing constant testing and unmentionable probing (Google “transvaginal ultrasounds,” I dare you). It is expensive and time consuming. It is inconvenient, particularly when navigating fertility treatments and blood draws around Shabbat and Jewish holidays. There was something reassuring in knowing that we were equally invested in the process and equally committed to addressing the stigma around infertility as a female-only issue.
We needed that support because at that point, our journey had just begun. In total, our fertility process took three years, during which we underwent five intrauterine insemination (IUI) cycles, two In Vitro Fertilization (IVF) cycles, two miscarriages, and an ungodly number of shots and blood tests. We are overjoyed that the result of this massive science experiment is our daughter Aliza, whose name means joy. After three years of exhaustion and struggle, it is hard to imagine a greater joy than Aliza entering our lives. We still believe that, even after being stuck at home with a toddler for months straight during a pandemic.
When we look back on those years, we learned two valuable lessons that we try to impart without sounding too preachy. Firstly, infertility is not exclusively a woman’s issue; in fact, it is equally a men’s issue. Men need equal resources, men need a place to talk about their experience, and we as a society need to stop perpetuating this false narrative. Secondly, openness is critical, not only as a release and catharsis, but because the more we talk honestly, the closer we come to battling the stigma. Fertility is a battle enough, let’s commit to ending the stigma and misinformation associated with it.
In the time since our baby was born, Hadassah, which advocates for women’s health issues, launched reConceiving Infertility to raise awareness, destigmatize and confront prejudices and misconceptions on this once-taboo topic, drive policy change at the state and national level, and empower patients to advocate for their own health.
reConceiving Infertility features a series of videos narrated by Amy Klein, author of The Trying Game: Get Through Fertility Treatment and Get Pregnant Without Losing Your Mind(April 2020, Penguin/Random House). Klein’s powerful story involved nine rounds of fertility treatment, 10 doctors and four miscarriages – in just three years. The first video, “How to Help People Struggling With Infertility During COVID-19,” is available at www.hadassah.org/infertility. “What Not To Say About Baby-Making” and “Infertility: Costs, Coverage, and Creativity” are next in the series.
The inability to have a child affects 6.7 million women in the U.S, according to a Centers for Disease Control study, or about 11 percent of the reproductive age population. Given limited access to insurance coverage and the high cost of treatments, including assisted reproductive technology (ART), many families incur substantial debt or are prevented from seeking treatment due to the financial burden.
Rebecca Ruberg Bio
Rebecca Ruberg serves as a Teen Education and Engagement consultant for the Jewish Education Project and has previously held a number of positions focused on engaging teens and young adults in meaningful Jewish experiences. Rebecca received her MA from the Hornstein Program for Jewish Professional Leadership at Brandeis University and concentrated her studies in informal Jewish education and engagement. She additionally holds a certificate in Jewish Philanthropy from the Wurzweiler School of Social Work at Yeshiva University. She currently resides in Closter, NJ with her husband, Rabbi Jeremy Ruberg, daughter Aliza and dog Caleb the Kelev.
Jeremy Ruberg Bio
Jeremy Ruberg is the Rabbi for Lifelong Learning at Temple Emanu-el in Closter, NJ. Rabbi Ruberg is a graduate of the Joint Program with List College and Columbia University receiving a BA in Talmud from JTS and a BA in Political Science from Columbia. Upon completing his undergraduate degrees, Rabbi Ruberg continued his studies at JTS in The Davidson School of Jewish Education and The Rabbinical School. While completing his studies, he worked in a variety of Jewish educational settings, including Camp Ramah in New England, Jewish Federations of North America and Rutgers University Hillel.