Miscarriage comes out of the shadows

The experience is incredibly common. Is America finally ready to talk about it?

When Sen. Tammy Duckworth had a miscarriage, she was worried it was her fault.

At the time, she was in the middle of a demanding Senate campaign while also serving in the House as a representative from Illinois. “Did I do something wrong?” she remembers thinking. “Was it because I’m working too hard?”

Her doctor assured her that wasn’t the case — after all, miscarriages are extremely common, happening in 10 to 20 percent of all known pregnancies, and the majority are caused by genetic abnormalities in the fetus. But that didn’t necessarily assuage what Duckworth was feeling.

“On the one hand, you’re suffering through this grief,” she told Vox. “And on the other hand, your health care providers are trying to help you deal with it by telling you it’s really not a big deal.”

People who go through miscarriage “have all these conflicting messages being sent to them,” she said. Duckworth needed time to process them all and heal from the loss of a much-wanted pregnancy — but it was time she didn’t have. She needed a dilation and curettage (D&C), a surgical procedure to remove the fetus from her body. And after that, “I left the doctor’s office and went right back on doing my job,” she said. “I think I took the afternoon off.”

Duckworth’s experience of miscarriage — the self-blame, the confusion, and the need to bounce right back without taking time to grieve — is all too common.

Despite increased conversation around other aspects of reproductive health in recent years, miscarriages remain stigmatized and talked about in hushed tones, if they’re talked about at all. “The cultural norms around pregnancy are just happy, and miscarriage is not necessarily a happy experience for most people,” Yamani Hernandez, the executive director of the National Network of Abortion Funds, who has experienced a miscarriage, told Vox.

But in recent years, more public figures like Duckworth, actress Gabrielle Union, and Michelle Obama have been opening up about their miscarriages, leading to more widespread conversation around the experience. And now, there’s growing recognition that people who go through a miscarriage need time to heal, physically and emotionally. Earlier this year, New Zealand became the second country in the world to provide paid leave in the wake of a miscarriage. Meanwhile, individual companies are beginning to offer miscarriage leave for employees — the Pill Club, a company providing online birth control prescriptions, announced such a benefit earlier this year. And on Tuesday, Duckworth and Rep. Ayanna Pressley (D-MA) will introduce the Support Through Loss Act, which would provide paid leave for people experiencing miscarriage.

“We’re human beings,” Duckworth said. “We need time to cope.”

It’s part of a push toward normalizing miscarriage and supporting people who go through it, one that may be just beginning. “There are families across the nation who feel alone and have been suffering in silence,” Pressley told Vox. “I want them to know that we see them.”

Miscarriage can be physically and emotionally painful — and isolating

A miscarriage is defined as any pregnancy loss before 20 weeks’ gestation — after that, any loss is categorized as a stillbirth. It’s not always possible to determine the cause of a miscarriage, but experts believe the majority have to do with chromosomal abnormalities in the developing fetus that are “not compatible with life,” Yasaswi Kislovskiy, an OB-GYN and advocate with Physicians for Reproductive Health, told Vox. Other causes can include chronic illness in the pregnant person, and potentially environmental factors — people of color and lower-income people have higher-than-average rates of miscarriage, and while the exact reasons aren’t clear, it may have to do with the chronic stresses of racism and poverty, Kislovskiy said.

The physical experience of miscarriage varies widely from person to person. Some people find out they’re miscarrying because they have abdominal pain and bleeding, which can last days or weeks. In rare cases, that can come with infection, which can cause foul-smelling discharge and prolonged heavy bleeding and require antibiotics or other care.

However, some people have no symptoms at first and only find out they’re miscarrying when an ultrasound shows the fetus is no longer developing, Kislovskiy said. At that point, if a doctor deems them at low risk for infection, they may be advised to wait for the body to expel the fetus on its own. In other cases, however, they may be prescribed medication or have a surgical procedure like a D&C to complete the process.

Even after the immediate symptoms have subsided, people may need time to recover physically from a miscarriage. “I was shocked, actually, at how physically debilitated I was” for a month after miscarrying, Hernandez said. “I just thought, you know, the pregnancy is over. But no.”

Then there are the emotional effects. Again, these are highly individual — some people who did not want to be pregnant may experience relief at a miscarriage, Kislovskiy said. But for some, a miscarriage is “incredibly tragic,” leaving them deeply distraught.

Those feelings can be compounded by factors like how long someone has been trying to conceive, whether they’ve gone through fertility treatments, and other stressors in their life at the time. Duckworth, for example, recalls miscarrying at nine weeks, after she had already seen the first fetal heartbeat on a sonogram. After years of fertility treatments, the sudden end of a wanted pregnancy “was really hard,” she said. “It was a real loss.”

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While miscarriage is an extremely common experience during which people often need physical and emotional support, it’s something many people go through nearly on their own. There’s a longstanding cultural norm in the US that people shouldn’t tell others about their pregnancy until the beginning of the second trimester, or about 12 weeks’ gestation, because that’s when the risk of miscarriage goes down. But as Sara Gaynes Levy reported at Self last year, that’s less of a hard deadline and more of a continuum, with the likelihood of pregnancy loss decreasing slowly as a pregnancy progresses.

And while the 12-week rule protects people from having to walk back the happy news of a pregnancy, it can also make miscarriage an incredibly isolating experience. When Hernandez miscarried in her first trimester, “I hadn’t talked to many people about the pregnancy yet, so it wasn’t like I could call a bunch of people,” she said. A first-trimester miscarriage is “invisible for a lot of people because they never got to even share that they were pregnant in the first place,” she added.

And when people do share the news of their miscarriage, they can encounter shaming and belittling comments. “I’ve definitely had people say, ‘You were barely pregnant,’ or ‘You weren’t pregnant that long,’” Hernandez said. “When you’re laying in a bed bleeding, it’s just like, ‘I don’t care.’”

It’s also all too common for people to assume that the miscarriage is somehow the pregnant person’s fault — one respondent to a 2015 NPR survey said she was told she caused her miscarriage by wearing high heels. At the extreme end of this spectrum, people can face arrest or criminal investigation for having a miscarriage if a doctor thinks they may have tried to self-manage an abortion.

Meanwhile, people often internalize the shame and stigma around miscarriage, leading them to embrace misconceptions that encourage self-blame. In the NPR survey, a majority of people reported knowing that genetic abnormalities are the top cause of miscarriage. At the same time, 64 percent mistakenly believed that lifting something heavy could cause pregnancy loss, while 28 percent wrongly said the same about previous use of an IUD. A full 21 percent thought miscarriage could be caused by just having an argument, which is also not true.

In such an environment, many say there’s a clear need for a lifting of the silence around miscarriage. “I want people to know how common miscarriage is, that it’s not your fault,” Hernandez said. “You’re no less valuable or important based on whether or not you can carry a pregnancy.”

The stigma might be starting to lift

That message is beginning to come through more clearly in recent years, as more people open up about their experiences. Union, for example, wrote in her 2017 memoir that “I have had eight or nine miscarriages.”

“For three years, my body has been a prisoner of trying to get pregnant — I’ve either been about to go into an IVF cycle, in the middle of an IVF cycle, or coming out of an IVF cycle,” she wrote.

The following year, Michelle Obama wrote about her miscarriage in her memoir, Becoming. She felt she had “failed because I didn’t know how common miscarriages were,” Obama said in an ABC interview at the time. “We sit in our own pain, thinking that somehow we’re broken.”

The same year, when Duckworth announced her pregnancy with her second daughter, Maile, she told the Chicago Sun-Times about her previous miscarriage. “I’ve had multiple IVF cycles and a miscarriage trying to conceive again, so we’re very grateful,” she said.

It’s not just celebrities and public figures — grassroots campaigns have also brought more attention to the experience of miscarriage. Psychologist Jessica Zucker, for example, started the #IHadAMiscarriage campaign in 2014 after her own miscarriage — it has now expanded into an Instagram community where people share their feelings about their own experiences. And earlier this year, Zucker published I Had a Miscarriage, a memoir of her experiences.

For Hernandez, the community “was a lifeline” as she processed her miscarriage. “It helped me know that there were other people experiencing what I experienced,” she said.

And beyond reducing stigma, lawmakers and corporations around the world have begun paying more attention to the needs of people going through miscarriage. New Zealand made headlines worldwide with its paid leave bill earlier this year. “The bill will give women and their partners time to come to terms with their loss without having to tap into sick leave,” Ginny Andersen, the member of parliament who introduced the bill, said at the time. “Because their grief is not a sickness, it is a loss. And loss takes time.”

Now Duckworth and Pressley are introducing a similar bill in the US. The Support Through Loss Act would require employers to provide at least three days of paid leave in the event of a miscarriage, an unsuccessful IVF or other fertility procedure, a failed adoption or surrogacy, or another medical diagnosis or event that impacts pregnancy or fertility.

The bill would help people like a teacher Pressley spoke with, who left school for a doctor’s appointment, found out she was miscarrying, and had to go back and work the rest of the day. The bill is about meeting people going through pregnancy loss with “care, compassion, and support, and paid leave should be a part of that,” Pressley said. People going through this experience “should not have to worry about whether or not they will still have job security.”

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The bill also sets aside $45 million annually for research on pregnancy loss and directs the CDC and the Department of Health and Human Services to share information about the prevalence of miscarriage as well as treatment options. People often try to deal with pregnancy loss “by consuming information,” Duckworth said. “And that information just isn’t out there.”

Paid leave proposals have faced opposition in the past from Republicans in Congress, and the Support Through Loss Act could encounter the same obstacle. But Duckworth is hopeful about getting bipartisan support, noting that she was able to get Republicans on board for another recent bill around reproductive health and families, the Friendly Airports for Mothers Act.

Giving people time off from work to deal with a miscarriage is an important step, many say, whether it’s to deal with physical symptoms like bleeding or the emotional fallout that can come with pregnancy loss. “Creating space for supporting people through the mental ramifications of a miscarriage makes a lot of sense,” Kislovskiy said.

But paid leave is just part of a bigger picture when it comes to supporting people through the end of their pregnancies. Part of that picture is improving reproductive health care across the board, from access to contraception through parental leave. “There’s so many places where you can move the needle,” Kislovskiy said. Sex education needs to be improved too: “So many people don’t know about how to get pregnant, how to avoid getting pregnant, about fertility, about periods, about any of these things,” Hernandez said. “I think it’s very confusing to know what’s happening to your body.”

And part of it is cultural change, so that people who have miscarriages no longer have to feel alone. People who experience pregnancy loss “deserve all of the supports possible: physical, emotional, medical, paid leave,” Hernandez said, “without any stigma or shame.”