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Story highlights

Miscarriage is both very common and very misunderstood

Efforts to rid miscarriage of its stigma have gotten a boost from social media

(CNN) —  

Miscarriage holds the unusual position of being both very common and routinely avoided in polite conversation.

According to the American Pregnancy Association, miscarriage occurs in 10% to 25% of known pregnancies. This means anyone who knows at least 10 women of childbearing age – a category that includes, hopefully, all of us – most likely knows someone who has had a miscarriage.

Nevertheless, many women skirt the topic, even with family and close friends. They don’t want to be seen as the kind of woman who can’t have kids. They don’t want to admit that they had to miss work for a week in order to bleed out a failed pregnancy in bed. And they don’t want to be the one to pierce the sunshine bubble that surrounds pregnancy in our cultural imagination.

This silence surrounding miscarriage has led to widespread misunderstanding. A 2015 study of more than 1,000 American adults found that more than half of participants said they believe miscarriage is uncommon, and nearly a quarter said they believe that lifestyle choices are the most common cause of miscarriage. In fact, the majority of them are caused by genetic problems in the embryo. Twenty-eight percent of the participants who had experienced pregnancy loss said they felt some shame as a result, and roughly 40% reported feelings of guilt and loneliness.

Although efforts to strip miscarriage of its stigma go back decades, the movement has gotten a significant boost in recent years from social media. Women, and occasionally men, are increasingly turning to their online networks to disclose the details of the miscarriages. Feeds are populated with posts about how it feels to miscarry and why talking about it matters.

Some of these posts have come from celebrities like Facebook co-founder Mark Zuckerberg, but many are from ordinary women whose candor and vulnerability has led to tens of thousands of likes and shares. Facebook groups such as Miscarriage Mamas and Miscarriage and Pregnancy Loss, both of which have about 100,000 members, are places where women seek medical advice and suggestions on how to handle personal relationships affected by their miscarriages.

This unprecedented atmosphere of candidness is helping women grieve their losses and, for some, pushing them to fight for structural changes to the way miscarriage is handled by workplaces and the medical system.

“Posts about pregnancy loss are often motivated by seeing other people’s posts,” said Nazanin Andalibi, a social computing researcher and lead author of a new study on how miscarriage is being discussed on social media. “When they see other people talk about [miscarriage], it makes them feel like there is less stigma and that, if they post something too, they can expect to get some positive support.”

Andalibi said the women she interviewed hoped their stories would help forge a narrative around miscarriage in a culture relatively absent of them. For some, this is about how to process their feelings.

When Emily Fauver, a 26-year-old in Shreveport, Louisiana, miscarried in fall 2016, she felt very alone.

“I decided to call my sister and aunt and tell them about it, only to find out that they had been through it,” Fauver said.

Inspired by this revelation, she decided to share her miscarriage story on Facebook a few months later. “I remember being afraid to cry. I didn’t feel as if I deserved to cry because ‘I wasn’t that far along,’ and ‘this happens all the time.’ I remember holding back the tears with every ounce of my being and not being able to look my husband in the face because I knew his pain would break me,” she wrote. The post now has 31,000 likes and nearly 40,000 shares.

“Writing that post really opened my eyes and helped me understand that the way I am feeling is normal,” Fauver said.

Others, Andalibi said, talk about miscarriage in order to bring about societal change.

When Janie Faville, a 28-year-old in Kansas City, Missouri, miscarried early last year, she experienced – in addition to a host of other emotions – sticker shock. Shortly after, she went on Facebook and shared her hospital bill for $1,369.57, writing, “Because people don’t talk about it, I will. This is how much a miscarriage costs with good insurance. THIS is why we need Planned Parenthood.” Faville shared the post with the Facebook group Pantsuit Nation, where it received 10,000 likes.

“I was shocked when I got the bill. How did I not know that something this common is this much of a financial barrier for women?” Faville explained. She said she sees social media as powerful tool, “my generation’s version of consciousness raising” – but don’t call her a slacktivist. She’s fighting for change offline as well and is pushing her employer to include pregnancy loss in its bereavement policy.

Jessica Zucker, psychologist and maternal mental health advocate and originator of the hashtag campaign #Ihadamiscarriage, said social media can help women figure out how to tell their miscarriage stories in person.

“In the aftermath of a miscarriage, many of us struggle with what to say and what to do,” Zucker said. “Many avoid talking about it because they don’t want to scare other women. But if we don’t talk about it, then [other women] are totally unprepared. We need to find ways to support pregnant women, no matter the outcome.”

This push toward transparency can also serve a political function, said Lynn Paltrow, executive director of the National Advocates for Pregnant Women. When women tell their miscarriage stories, they help dismantle the notion that women are to blame when something goes wrong with a pregnancy.

“There is the illusion that pregnancy is a promise, rather than a possibility, and this mythology feeds into the politicization of pregnancy,” Paltrow said.

According to Paltrow, in countries where abortion is criminalized, many women who experience miscarriage are reported to the police and end up in jail. Though this happens far less frequently in the United States, there are instances here in which miscarriages have led to arrests or worse. Should personhood laws – which seek to classify embryos and fetuses as “persons” and grant them legal protections – pass, Paltrow expects that it will happen far more often.

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Another positive outcome of the virtual miscarriage conversation is the fact that it gives women the chance to learn about the physical and psychological realities of miscarriage before they have one. Many women enter miscarriage unprepared, said Linda Layne, author of “Motherhood Lost: A Feminist Account of Pregnancy Loss in America,” largely because doctors rarely discuss the circumstances of miscarriage until after they happen and because women rarely hear stories from their friends. For example, many are unaware that women can go into labor during a miscarriage, even early ones. They also aren’t sure how to properly handle the remains.

“This is just a matter of a doctor saying, in advance, ‘This happens a lot; here is what to expect; here is how to prepare, and here is what it would mean.’ This would help reduce the trauma, before they start bleeding all over the place,” Layne said.

Though it’s still not common for women to hear this from their doctors, they are, increasingly, hearing it from one another – online. Post by post, tweet by tweet, they are reversing centuries of stigma surrounding pregnancy loss, providing one another with both coping tools and the opportunity for some relief.

Elissa Strauss writes about the politics and culture of parenthood.