The Feminist

Breaking the silence: why we need to talk more about miscarriage and infertility

Kylie Kendall

Visit any online community of women who’ve gone through a miscarriage and you’ll find overwhelmingly heartbreaking stories, inspiring support systems, and a recurring complaint: that most languages in the world have a semantic oversight when it comes to the loss of a child.

“There’s no word to describe a mother who’s lost a baby,” says Kemayla Fleming, the director of Ontario’s Pregnancy and Infant Loss (PAIL) Network. “We’re not a society that has a word to describe who we are, what our identity is, let alone the (social) infrastructure to support this kind of loss.”

October is officially recognized in the US as National Pregnancy and Infant Loss Awareness Month, but not many people know about it and overall, it hasn’t done much for families that have lost a pregnancy or a baby.

But this year, a few high-profile women and men have been taking matters into their own hands. After speaking publicly about her struggles with infertility (and how insensitive she found it when anyone would ask her when she was going to have children), Chrissy Teigen announced her pregnancy last week.

And back in August, Mark Zuckerberg shared that his wife, Priscilla Chan, had gone through three miscarriages before getting pregnant.

For women who’ve gone through such an incredibly isolating experience, these are stories of hope. And this level of public recognition means the beginning of a sense of togetherness or shared grieving with others who’ve gone through similar experiences. It’s also a nod of acknowledgement and support from those who haven’t.

“Silently, I take my son’s birthday off every year and go to the grave and do my own memorial, but I don’t have a (recognized way) to do that. I just take a vacation day or a sick day,” says Fleming.

But why does her grief need to be silent? Why are we so uncomfortable talking about miscarriage, even when we know that up to 30 percent of women who get pregnant will miscarry?

A lot of it has to do with internalized shame. Fleming explains it as the reproductive version of the American Dream.

The idealized trajectory goes something like this: “if I graduate from university, I get married, I buy a house, we get pregnant, I’ll have a healthy, happy baby. It goes back to that ‘if you build it, it will come’ dream,” says Fleming. “And that’s why I think it hurts people, too: it just throws people completely off.”

The problem with this line of thinking, and why it can be so confusing and deeply hurtful, is that reproductive issues aren’t tied to any kind of morality. Our bodies don’t care if we’re good people, or even if we’d be the most amazing mothers — it’s pure biology.

But in a culture that, time and time again, tells women we’re our most useful, our most loved, most valued when we’re having and raising children, it can be hard to understand that our worth isn’t determined by our ability to reproduce.

“You have one miscarriage, that’s really sad and that’s private. You have two, you have three, you start to feel like you’re a failure as a woman. Like you can’t do this basic, fundamental thing,” says Darci Klein, the author of To Full Term.

And it’s not just something that becomes a problem once we’re ready to have children. For many women, motherhood is something deeply ingrained in them from the time that they are children.

“Attachment to your unborn baby begins even before conception,” says Fleming. “When we’re children, we play with dolls, we role model having a house… It’s there through your upbringing, so when you have become pregnant you’ve already somewhat built a self-identity as a parent way before the conception. Even if it was an unwanted pregnancy, there was some attachment that’s already formed, so it’s that loss that’s been built up for years.”

But for a society that’s idealized the concept of raising children, Western culture is also pretty squeamish about reproductive health issues. In fact, it’s so taboo that women themselves aren’t even thinking enough about it: a 2014 study found that half the women surveyed had never discussed their reproductive health with their doctors.

The taboo is reflected in the way we talk about – or rather don’t talk about – the physical pain that women have to suffer through, often silently, for fear of grossing anyone out.

In an essay for Vice last year, Kate Merry wrote, “For every person reading this who says, ‘Ew, that’s disgusting, too much information! Keep it to yourself!’ there will be a woman lying in a hospital bed (or not) somewhere, bewildered and in pain, as the new life she held inside of her—that pure magic—bleeds away. And for anyone who thinks these things shouldn’t be talked about on a public platform, there is a woman carrying the guilt, shame, and confusion of losing a baby around her neck like an anvil, who might want to relay the story, blow-by-blow, so she isn’t just reliving it in her head, alone.”

Add a factor of unimaginable loss and not only are we squeamish, but deeply emotionally uncomfortable with the idea of pregnancy and infant loss.

The result is that a woman who goes through a miscarriage and has a lot of complicated feelings about it feels like she needs to keep those feelings to herself.

Since writing her book, Klein has received hundreds of emails from women telling her their stories. “The two common themes are, obviously, sadness, but the second theme is isolation.”

The healthcare system could be filling in this gap, at least in part, says Fleming, but the reality is that healthcare workers aren’t immune to our culture that makes us uncomfortable with the issue. And it doesn’t just mean that a nurse or doctor might occasionally say something insensitive; there’s actually a serious lapse in the kind of mental health care women are receiving.

In many North American hospitals, you’ll find programs similar to Ontario’s Healthy Babies Program, where doctors check in on new parents to not only make sure their newborn is developing in a healthy way, but that new parents are adjusting well. They provide services if the mother is experiencing postpartum depression, for example.

But women who’ve miscarried aren’t often offered the same supports, says Fleming. Instead, they’re left to their own devices to deal with the mental health repercussions. And the stats are dire, with research showing that one in five women “will experience having anxiety levels similar to people attending psychiatric outpatient services, and up to one-third of women attending specialist clinics as a result of miscarriage are clinically depressed.”

Which leads us back to the failed American Dream trajectory: “My plan was, ‘I’m going to work until I get a certain level of achievement, then I’m going to have my kids, then I’m going to go back.’ A ridiculous version, like I’m going to control the universe,” Klein says. “But going through this, it was crushing personally… I was so mired in depression that it definitely took a toll on my career. I had to take a step back.”

“And I think as a society, this is a price that women pay.”

Then there’s the preventative care that women could be receiving in many cases, but aren’t.

Back in 2007, Klein wrote To Full Term following the story of her fifth pregnancy – but only her second that went to full term. Before that, she had gone through three miscarriages and the premature birth of her first daughter. She’s made it her mission to make sure other women don’t go through the same struggles.

“If you talk to ten women, nine, maybe ten of them are going to tell you ‘I had a miscarriage and what my doctor said to me was that this is nature’s way of taking care of a problem,” says Klein.

One problem can be chromosomal abnormalities in the baby. But researchers like Dr Mary Stevenson, the director of the recurrent pregnancy loss program at the University of Chicago, have found that this is true for early losses, but at 10 weeks or later, there’s only a 5 percent likelihood that chromosomal abnormalities are the cause.

“That means 95 percent of these women have something else going on,” says Klein. “That miscarriage wasn’t just a sad day; it was a medical symptom that’s overlooked.”

The problem is that current medical guidelines in the US recommend that doctors wait until a woman has had two or more pregnancy losses before doing any testing to determine whether there were treatable causes.

All this is to say: “Arm yourself with facts,” says Klein.

And for women who are in their 20s and 30s, looking toward family planning in their future, Fleming says the best way to prepare for such a devastating potential reality is to reject isolation, to practice empathy: “Realizing that your friends and colleagues are going to go through it and how we can support them, and then if it does happen to you, how you would want to be supported in return.”

And that’s what the larger cultural conversation needs too: empathy. It’s time to listen to what women with first hand experiences are saying, and talk, think, write about miscarriage so no one has to grieve in silence.