This Black History Month, we sought to understand the infertility journey from a Black perspective. We wanted to know: What is the lived experience of infertility within the Black community? And where are more efforts needed to make infertility care more accessible?
While most of the data on this topic is US-based, the verdict is clear. Between medical racism, financial barriers, cultural silence, and lack of representation, Black women face unique barriers when it comes to infertility.
In Canada, many federal and provincial/territorial policies perpetuate racism against BIPOC patients accessing the Canadian healthcare system. A 2019 study published in the National Library of Medicine exposed how Black women’s sexual and reproductive health and rights are impacted by systemic racism in Canada. One outcome of this is that, because of the negative experiences many Black patients have with the healthcare system, they often don’t seek treatment, or they wait until there’s an emergency.
But we didn’t want to stop at facts. We felt it was important to hear what Black women in Canada really have to say. So we interviewed three of our Black female patients about their lived experience and perceptions around dealing with infertility as a Black person.
Meet the women
Meet the women who shared their stories with us (pseudonyms used for anonymity):
Carol is a 38 year-old Afro-Caribbean woman dealing with secondary infertility. After having two previous children, complications in her second birth made it very hard for her to conceive her third. With two children already, she’s faced with internal doubt about whether she deserves to access infertility care.
Jennifer is a 39 year-old Jamaican woman. After several interventions and multiple miscarriages despite normal tests, she is in limbo, not knowing what’s wrong or whether she will be able to have her first child.
Finally, Samantha is 29 and Jamaican-born. After five years of working with Dr. Tanya, including tests and surgery to increase her spouse’s sperm count, she got pregnant on her first round of IVF, and is currently 11 weeks along.
From our own research and these women’s testimonials, we identified a few key issues facing Black women when it comes to infertility.
A significant barrier for Black folks accessing fertility treatments is cost.
Fortunately, Ontario covers the cost of one round of IVF, but many people don’t know this before they seek treatment. All three women we interviewed used this aid, but two out of three of them didn’t know about it until they met Dr. Tanya. Samantha confirmed, “No one talks about the one free cycle. Everyone thinks you need insurance.”
On top of this, because many patients need more than one round of IVF, there is still a financial barrier to treatment. Beyond the first cycle, Jennifer didn’t find any extra assistance for Black folks undergoing infertility treatment. “Some people mortgage their house, but some don’t even have a house. For most of us, once you finish your subsidized round of IVF, you just have to wait,” she told us.
According to Samantha, the problem is not just the existence of financial aid programs, but people’s beliefs about them. “There are more resources we’re not tapping into. There aren’t enough Black programs, but even when there are, no one is showing up,” she said.
When we probed further, Samantha shared an insight that struck us, “Black people are often picked last. We’re programmed to think that because we’re picked last, we’re not deserving of this opportunity. But we need to know our worth. We need to say, my opinion matters. I matter, too. Some people give up on their dreams before they even start because they think they’re not deserving.”
Limiting beliefs and false narratives
Another problem Black women face is a set of stereotypes and limiting beliefs, from both within and outside their communities, that deter them from seeking fertility treatment.
For example, despite Black women actually being more likely to experience infertility, common stereotypes suggest that Black women are “hyper fertile” and can easily have children. Carol admitted to feeling some of this pressure, often thinking, “I shouldn’t be here. One of my grandmothers has eleven children and the other has fifteen.”
From within the Black community, there are also certain cultural narratives that deter women from seeking fertility help. Jennifer shared about her Jamaican culture, “The narrative we’re taught is: get an education, a job, a husband, a home, and then think about a family. When girls in high school have painful periods, they tell you to take birth control and forget about it because you don’t need a kid now. No one is thinking long-term. You don’t do fertility tests unless you have to. So by the time we’re aware of fertility issues, we’re in our 30s.”
The result of these limiting beliefs and false narratives is that fewer Black women seek fertility treatment early. Carol and Samantha both mentioned seeing very few Black women at Dr. Tanya’s clinic. Carol said she doesn’t know “if it’s an accessibility issue, shame, or if Black people just don’t do that.” In Samantha’s eyes, one thing is for sure, “We need to change the narrative, because it’s just holding us back.”
Infertility is rarely spoken about in society at large, but our interviewees called attention to a particular silence in their Caribbean communities. This silence makes it hard for women to seek help when they’re struggling to conceive, as well as to feel supported throughout the treatment process.
According to Jennifer, part of the problem is that, “Unlike other diseases, infertility is an invisible thing. No one walks around saying they had a miscarriage. It’s not until you reveal your story to someone that they may also reveal their infertility struggles.”
When we asked our three patients about their community support systems throughout the journey, we uncovered some interesting truths. They each had close confidantes, but felt there was an information sharing gap in their broader communities.
Carol said she selectively talks about her infertility journey with people, noting that “The Caribbean community is private about those things. When you talk about your journey, it’s not an open conversation. You just tell them the basics.” For her, “One of the hardest parts is not being able to connect with other women in my community about the experience.”
Jennifer had a similar answer, “When I tell people back home in Jamaica, they want to avoid it. They don’t want to bring it up because it’s sad. They’re not socialized to think there are challenges. I find myself educating them, because they thought by the time I was ready, I could have a baby.”
Samantha shared from a Jamaican perspective, “There’s a stigma in our culture that it’s best to leave things unsaid and undone. I haven’t seen anyone I know talk about infertility. I don’t think anyone talks about it outside of their home.” But she also believes “If we talked about it, we might realize we have more in common than we don’t.”
It’s clear that the Black population is underrepresented in the waiting room chairs of fertility clinics. As Carol highlighted, “There are no infertility posters or pamphlets with Black faces.” But a part of the problem is a lack of representation in doctors’ chairs.
While representation is only one factor in the medical racism issue, having more BIPOC professionals in healthcare would be a step in the right direction towards hearing and properly addressing the concerns of diverse patients.
Since Dr. Tanya is also a Jamaican-Canadian woman, we felt it was important to ask our interviewees how they felt about having a Black fertility doctor. Having a fertility doctor who shares their cultural background was a bigger deal for some of the women than others, but each of our three interviewees expressed being more comfortable because of it.
Carol said, “It gives a little bit of comfort, in the sense that she knows our history. She knows that Black women are stereotyped in the medical field, like how we’re supposed to be able to handle more pain. I felt comfortable asking her if these things were true, and I don’t think I would have felt comfortable asking that to a non-Black person.”
For Jennifer, having a doctor who shares her Caribbean background means she “can identify with someone who understands our culture and mindset.” Samantha was even more appreciative, expressing, “For me to see that she was Black made me feel so much more comfortable, especially as a woman.”
The way forward
Our interviewees shared a lot of devastating truths about navigating infertility as Black women. But they also had no shortage of suggestions for a better way forward.
In Jennifer’s vision for her community, she shared, “This information should be more known. It’s not wrong to check up on your fertility early, even in your 20s. We should be more open with our young daughters and sons.”
In our final question, we asked what these women would tell other Black folks who are struggling to conceive.
Samantha wanted to tell women struggling that, “The biggest step is going to seek help for something you thought you could do on your own. But it’s okay to find treatment. You’re not broken, you just need a little help.” Her parting advice was, “Get advice from a professional – someone you trust. Find out as much information as you can. Find out what your options are, and go from there.”
Carol’s final words to her fellow women were, “Know that we’re out here. There’s Black women struggling with fertility. I’m glad Dr. Tanya is giving us the opportunity to get our voices out there.”
What’s being done
What’s being done to improve access to, and quality of, infertility care for Black patients in Canada?
Medical societies including Black Physicians Association of Ontario, Black Physicians of Canada, and the SOGC are demanding better quality care for Black women.
Organizations are also being created to address the unique challenges Black women face around fertility. The Resilient Sisterhood Project is a Boston-based non-profit that educates and empowers women of African descent on diseases of the reproductive system that disproportionately affect them, through a cultural and social justice lens.
While some Canadian data exists on the intersections between Blackness and infertility, the vast majority is from the US. We need more country-specific data to understand the healthcare challenges Black folks are facing in Canada’s unique context.