Her posts reveal an often closeted world: of awkward run-ins with colleagues and acquaintances, of stacks of porn for men making “contributions,” of fellow patients dealing with multiple traumas (one woman she describes is harvesting her eggs before cancer treatments render her infertile) and loaded moments, like holding her young son “like a shiny gold star” the day she had to bring him with her.
And Agrell’s tweets quickly reverberated beyond Twitter, lauded as an act of courage and an audacious pushback against societal taboos.
“Like many women, I’ve spent a lot of my life listening to other people discuss women’s choices and their right to make them,” says Agrell. “I think some of us are [now] saying, ‘Okay, if you want to tell me what you think about my decisions, let’s talk frankly about the experiences that led me there.’”
Agrell believes we’re on the cusp of a shift in how we talk about infertility and loss. Emma Hansen, for example, a Vancouver model and daughter of wheelchair athlete Rick Hansen, recently wrote a heart-wrenching blog post about giving birth to her stillborn son. And there are formal campaigns to break the silence around reproductive issues: In the United States, the Center for Reproductive Rights is promoting women’s personal stories to keep states from passing laws that will restrict access to abortion and contraception; as they prepare for Infertility Awareness Week later this month, IVF advocates in Canada are encouraging those who’ve been through fertility treatments to speak out.
But for all the women who want to share what they’ve been through – the grief, the physical and psychological stress, the pain and hopeful determination, the difficulty of fielding well-meaning questions that cut like a knife – many prefer to deal with their experiences in private. In reporting this story, the National Post heard from a dozen Canadian women who have experienced infertility or pregnancy loss. Most of them wanted to tell their stories – but without their names attached.
Danielle, a twentysomething professional in Alberta has miscarried twice, the second time because of a ruptured ectopic pregnancy that saw her lose a litre and a half of blood. The first time she didn’t even tell her parents. And some of her friends still don’t know what she’s gone through.
“Pregnancy is really romanticized,” she says. “It’s a miracle, it’s a gift. And so if you’re not capable of being pregnant or you can’t keep your pregnancy, what does this mean for you? That you’re cursed?
“It makes people who’ve been through it feel like they can’t talk about it because there’s this voodoo superstition around fertility: ‘If you just relax, it’ll happen for you’ or ‘This wasn’t the time,’ ‘It wasn’t meant to be.’ It’s said with the best of intentions but there’s a sincere lack of empathy behind it.”
“I’m a hypocrite for being angry because if people had talked about it, I maybe wouldn’t have felt that shame and that brokenness,” she says. “But at the same time I wasn’t willing to talk.” Not discussing it helped protect her from pain.
Even Agrell, a communications strategist and former reporter (and, full disclosure, a friend) thought carefully before dispatching tweets from the waiting room of her fertility clinic last Thursday. She wrote them the night before and showed her husband, after all, “it’s his story too,” she says.
The couple had one healthy child. But at 21 weeks, Agrell’s second pregnancy ultrasound revealed a severe genetic condition called osteogenesis imperfecta, which prevents bones from forming correctly and in this case was “incompatible with life.”
Rather than be induced and deliver a stillborn, the couple chose to have a termination the following week. They conceived again a few months later and delivered another healthy child. But Agrell later suffered damage to her uterus that makes it impossible to conceive naturally, which led her to pursue a round of IVF.
“Both with this and when we had our loss, you realize how many people it’s happened to,” she says. “No one talks about it until you say ‘Hey, this thing happened to me.’ Then the floodgates open.”
‘We need to recognize that pregnancy’s not an accessory – it’s a process. And it’s not a process that always goes well for people’
In the hours and days after sending out her tweets, she heard from people who hadn’t talked about their experience with anyone.
Toronto infertility and pregnancy loss counsellor Erica Berman sees a lot of people suffering in silence and feeling immense shame about what they’re going through.
“Culturally speaking, we’re obsessed with fertility and we think it’s fodder for the public to talk about women’s bodies … [we feel] we can give pregnant women judgment about what they should and shouldn’t do,” she says. “But when it comes to infertility and pregnancy loss nobody knows what to say, nobody knows how to handle it.”
That means women who do talk about it can open themselves up to well-meaning but misguided comments.
“There is the occasional person that says something a little hurtful, like, ‘It happens to a lot of people,’” says one Mississauga woman, a 31-year-old accountant, who miscarried at 10 weeks. “I didn’t know why that bothered me, and then I read somewhere that it’s like saying to someone [mourning a death from a car accident or cancer], ‘Oh, it’s really common.’ You would never say that.”
But because it doesn’t conform with our expectations about what is “natural” or “normal,” infertility and loss are hard to understand unless you’ve been there, says Berman, who has experienced it herself. It feels like “you’re struggling for oxygen … It’s that primal.” And not being able to fulfill a vision of a family for yourself can also lead to deep grief.
“I see, regularly, people who are extremely upset all the way to clinically depressed and anxious, dealing with suicidal ideation, feeling they have no reason to live,” she says. “That even happens to women dealing with secondary infertility, when they already have a child.”
Danielle describes her losses as an incredibly “isolating” experiences.
“And to talk about it to people, that the thing that everybody should be able to do you can’t and to talk about the loss, I couldn’t do it,” she says. “Especially the longer it went after the losses, the harder it got to talk about. … I didn’t want the pity.”
Motherhood is still seen as the most important role in a woman’s life and the inability to fulfill that role is still thought of as a failure, says Glenda Wall, a professor of sociology at Wilfrid Laurier University in Waterloo, Ont. And thanks to our risk-averse culture, women often blame themselves when things go wrong. The three-month code of silence around a pregnancy is meant to protect people from the pain and awkwardness of discussing a miscarriage, she says.
Agrell considers that code to be “old fashioned,” she tweeted.
The problem, she says, is not what we share but that, as she puts it: “We’re bad at taking on each other’s pain.”
But she does believe that is changing.
“We just need to think about the messages we send to people when we use certain words or when we ask certain questions,” she says. “And we need to recognize that pregnancy’s not an accessory – it’s a process. And it’s not a process that always goes well for people.”
Agrell believes that talking more openly about reproductive issues would help counter dangerous misinformation and stigma around fertility, loss and abortion.
Of course people should not feel pressured to discuss something so personal and painful, but they should know, she says, that there is a choice.
“They should recognize there’s an environment in which they can if they want to and when they’re ready to.
“I couldn’t have talked about this two years ago, I couldn’t have talked about it out loud. But now I’m in a place where I’m reconciled with what’s going on.”