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When Casey* got pregnant at age 28, she was elated. But then she experienced an ectopic pregnancy that ultimately ruptured both of her fallopian tubes. At age 29, she decided to go through in vitro fertilization (IVF) in order to have a child.
“I didn’t tell anyone [I was doing IVF] except my partner. It was very isolating,” she says. Casey says she didn’t think her friends would understand, and while she believes her family would have been supportive, she couldn’t bring herself to tell them. Black women didn’t go through IVF, she thought—certainly she hadn’t heard anyone talk about it.
Then she discovered The Broken Brown Egg, an infertility educational resource and support group created specifically for women of color. “I found a whole community of Black women who knew what I felt,” Casey says.
As she discovered, Casey certainly wasn’t alone in her struggles. According to the U.S. Department of Health and Human Services’ Office of Women’s Health, roughly 10 percent of women ages 15-44 experience infertility. Yet many people with infertility issues go through it privately, thanks in part to an enduring stigma that associates womanhood with the ability to bear children. The taboo around the subject can make it hard for people to talk about their own struggles, let alone ask for (or access) the basic information they need. Enter online fertility support groups and platforms, which defy the rule that connecting IRL is more powerful than virtual connection.
Creating community online
Much like Casey, Mairin Wheland, an Irish infertility patient, felt she had no one to turn to for support when she was going through IVF. “I always thought people were uncomfortable with the topic of infertility, and it’s especially taboo here in Ireland,” Wheland says.
When she was considering—and then experiencing—IVF, Whelan says she had so many questions and no one she felt comfortable asking. It wasn’t until after her daughter was born that she discovered The Fertility Talk, an online platform founded in 2019 that presents evidence-backed information regarding infertility in a way that’s easy to understand. Finally, she found the answers she sought—along with an entire community of others who were looking for more information.
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Regina Townsend, founder of The Broken Brown Egg, says she felt particularly lonely when she and her husband embarked on their own infertility journey. “The narrative I’d always heard was that [Black women] were hyper-fertile. The more important thing was to not get pregnant,” she says. In fact, studies show that Black women may be twice as likely to experience infertility as white women. But Townsend, like Casey, rarely ever heard Black women talking about their infertility struggles in public.
That’s why The Broken Brown Egg, which started as a personal blog about Townsend’s infertility journey, has morphed to become a place for women to share information and support with one another. In addition to content about topics including IVF, PCOS, managing anxiety and depression, and ways to practice self-care while trying to conceive, The Broken Brown Egg includes a closed Facebook group where women can connect with each other and share their experiences. “The private group is a really great community,” Townsend says. “We have what we call ‘moonshine meetups;’ it’s a Zoom call where each person has their glass of wine and just talks about what sucks. Grief and infertility often go hand in hand.”
“These women make me want to continue to love and encourage them like they do me,” Casey says of the community she’s found through The Broken Brown Egg. “I’m so thankful for them all.”
Tackling the fertility information gap
Digital infertility support groups don’t just provide community; as Wheland discovered, they also are a real educational resource for many people. Research shows that the average person has very little understanding of the basics of fertility, no matter their income or education level. A 2019 study of 1,000 U.S. women aged 20 to 44 found that the only 14 percent knew the correct definition of the menstrual cycle, and just 20 percent knew that a person’s “fertile window” was three to six days of their cycle. A 2013 study, which asked over 10,000 people in 79 countries to voluntarily take a quiz assessing their knowledge of fertility (including risk factors and myths about infertility) found that the average score was 59 percent—hardly a passing grade.
The lack of basic knowledge makes grappling with infertility that much harder, especially if, like FertilityIQ founders Jake and Deborah Anderson-Bialis, you can’t find reliable sources of information outside of the doctor’s office. “The major issue we faced was that we didn’t feel like the quality of information available to us matched the cost and seriousness of the subject,” says Jake Anderson-Bialis. “We felt we had to make life-altering decisions with very little context.”
Sarah Lyndon, CRN, founder of The Fertility Talk, encountered a similar problem when working with her patients as a fertility nurse. “I saw a real gap between what the experts were learning and patients knew,” Lyndon says. She often found that the latest findings about infertility (such as research and treatment options) often didn’t make their way to patients. Instead, key information often stayed buried in scientific journals. That’s why she works to make the information on The Fertility Talk super accurate and cutting-edge, while still being easy to understand for anyone who comes to the site with questions.
FertilityIQ, which the Anderson-Bialises founded in 2015, goes one step further and offers educational courses ($95 each, or $25 for one part of a course) on topics including the connection between diet and lifestyle and infertility, endometriosis, and egg freezing. Each course is taught by respected medical experts in the fertility space, often from Harvard, Yale, Columbia, and Stanford.
Highlighting individual journeys and struggles
Knowledge is power, and it’s by sharing knowledge and creating connections that these online groups are succeeding in breaking down stigmas associated with infertility, especially in communities where the topic is especially taboo.
“There are a lot of conversations in the Black community about what we ‘don’t’ do,” Townsend says. “We don’t go to therapy, we pray. We don’t ‘give our kids away’ or adopt. Phrases like that are really damaging. It’s the wrong story to tell ourselves,” she says, particularly since it stigmatizes valid family-building options outside of childbirth. She makes an effort to discuss adoption and fostering, among other topics, on The Broken Brown Egg so that people know that those options exist—and feel okay about considering them.
FertilityIQ also wants to be a resource for those who often are overlooked in fertility discussions, such as the LGBTQ+ community. “We have specific courses for trans men, trans women, African American women, among others,” Jake Anderson-Bialis says, in order to provide information more specifically tailored to their unique experiences.
The site also allows users to look up specific doctors and clinics in order to leave and read reviews—which lets people hear from others in similar situations who may have similar backgrounds. “When you read a review, you can see the orientation, race, income, treatment type, and underlying diagnosis of the person writing the review. That’s really important because if you’re a woman over 40 using a donor egg, for example, you want to hear from someone in a similar boat,” Jake Anderson-Bialis says, since that person’s experience would likely be very different from someone who is 10 years younger using their own eggs.
Everyone’s experience with infertility is a little different. But when it comes to dealing with the loneliness, the stigma, or just the lack of information, online communities such as these can be a lifeline for people in need.
*Name has been changed.
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Written by: WellGood
