Women come in the morning: give blood, have ultrasounds, get injections. And then to work, silent on the early violations of their day.
— Tweet from a fertility clinic patient.
It’s like saying to someone, if someone died in a car accident or died of cancer, ‘Oh, it’s really common’
‘Women come in the morning: give blood, have ultrasounds, get injections. And then to work, silent on the early violations of their day.”
With that tweet from a Toronto fertility clinic last week, Siri Agrell delivered a rare, raw and powerful description of what it’s like to pursue in vitro fertilization.
She revealed a world of awkward run-ins with colleagues and acquaintances, of stacks of porn waiting for men as they make their contributions, and described how she found herself holding her young son “like a shiny gold star” the day she had to bring him. One woman she met was there to harvest her eggs before cancer treatment rendered her sterile.
Her tweets quickly reverberated beyond Twitter — lauded as an act of courage and perceived as a bold backlash against societal norms that connect a very common experience with guilt and shame.
But the communications strategist publicly shared her experience because she feels something of a “sea change” happening in the way women share their stories of infertility, loss and other reproductive issues.
“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,” she told the National Post. “I think some of us are (now) saying, ‘ OK, if you want to tell me what you think about my decisions, let’s talk frankly about the experiences that led me there.’ ”
In a culture that celebrates and idealizes pregnancy while flooding social media platforms with every adorable move a child has ever made, there is a real silence and caution around revealing the full, and sometimes painful, fertility picture for many Canadians. Fifteen per cent of pregnancies end in miscarriage. Sixteen per cent of couples struggle with infertility. And for those whose path to parenthood — already a minefield of social judgment — is not as smooth as society suggests it will be, it’s a vicious cycle: Something that’s already painful to discuss becomes even harder when nobody understands.
Some people, like Agrell and like Emma Hansen — a Vancouver model and daughter of wheelchair athlete Rick Hansen — who wrote a heart-wrenching blog post about giving birth to her stillborn son early last month — are looking to change that by sharing their own experiences. In the United States, the Center for Reproductive Rights is relying on the strength of personal stories to keep states from passing laws that will restrict access to abortion and contraception. As they prepares for Infertility Awareness Week later this month, IVF advocates in Canada are encouraging those who’ve been through cycles of fertility treatments to speak out about an experience so many describe as isolating and misunderstood.
While some are speaking up, many are dealing with these experiences privately — and may even prefer it that way. In the reporting of this story, the National
Post heard from a dozen Canadian women who have experienced infertility or pregnancy loss. Most of them did not want to attach their names to their stories. But they wanted people to know about the grief, the physical and psychological struggles, the pain and hopeful determination, the pro- hibitive costs, the difficulty navigating the maze of social judgment and fielding well-meaning questions that cut like a knife.
“There is the occasional person that says something a little hurtful, like, ‘It happens to a lot of people,’ ” said one Mississauga woman 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, if someone died in a car accident or died of cancer, ‘Oh, it’s really common.’ You would never say that.”
The 31-year-old accountant says that, in hindsight, she wishes she had told more people about her loss and her complicated pregnancy before it, if only to have gotten more support and avoided the stress of making excuses. Danielle, a 20-something professional in Alberta who miscarried twice — the second time in a ruptured ectopic pregnancy that saw her lose a litre and a half of blood — says she too did not find comfort in hearing her experience was statistically common. The gap for her was the fact that she did not know anyone in her life who had experienced losses too — at least not until her girlfriend told her she had suffered a miscarriage.
“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,” says Danielle, who did not tell even her parents about the couple’s first loss. Many of their friends still don’t even know. “But at the same time I wasn’t willing to talk.” Not discussing it helped protect her from pain.
Danielle feels the way we talk about pregnancy is “limiting the conversation” when in- fertility or a miscarriage occurs.
“Pregnancy is really romanticized, right?” says Danielle. “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.”
Agrell (who is a former reporter and, full disclosure, a friend) thought carefully before dispatching her string of powerful tweets as she sat in the waiting room of her fertility clinic last Thursday. She wrote them the night before and showed her husband because, after all, “it’s his story too.”
After having one healthy child, her second pregnancy ultrasound at 21 weeks revealed a severe genetic condition called osteogenesis imperfecta — a condition in which bones don’t form correctly. This particular type was “incompatible with life.”
Rather than be induced and deliver a stillborn, the couple chose to have a termination at 22 weeks. They conceived again a few months later and delivered another healthy child. Agrell later suffered damage to her uterus that makes it impossible to con- ceive 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.”
In the hours and days after sending out her tweets, she heard from people who hadn’t talked about their experience with anyone.
“After we lost our baby, people we’re very close with — like family members — told us about their miscarriages we’d never heard about before. And at both times it just sort of struck me that there’s so many people dealing with these things completely alone.”
Toronto infertility and pregnancy-loss counsellor Erica Berman sees a lot of people suffering in silence and feel immense shame about what they’re going through. She connects this with a lack of understanding about how infertility happens — that it is 40% female, 40% male and 20% unexplained or the infertility is on the part of both, and often due to a medical condition.
“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.”
Because it doesn’t conform with our cultural ideas about what is natural and normal, infertility and loss are hard to understand unless you’ve been there, she says. In- fertility feels like “you’re struggling for oxygen,” says Berman, who has experienced it herself. “It’s that primal.” And not being able to fulfil 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 people to look at me and think that. I didn’t want the pity.”
Motherhood is still seen as the most important role in a woman’s life and the inability to fulfil that role is still thought of as a failure, says Glenda Wall, a professor of sociology at Wilfrid Laurier University in Waterloo, Ont., who researches how motherhood is portrayed in the culture.
We are much more risk averse nowadays, she says, and parents get the message that if they avoid all risks, they’ll be fine. If things don’t turn out that way, the selfblame becomes more acute. At the same time, social media has enabled people to share more about themselves than they ever have, leading to Facebook syndrome — or the propensity to share only the good stuff, making the airing of a difficult and little-understood experience that much harder. 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. And she made another compelling point: “We’re bad at taking on each other’s pain.” She also called out that code of silence as being “old fashioned.”
But social media has also helped people struggling with infertility and loss to find one another and to have some agency over their stories — something Agrell found very important.
She points to the way more openness about mental health has begun to change the vocabulary used around it and reduce the number of assumptions people make.
“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.”