What the public is saying about miscarriage in 140 characters

Losing a pregnancy because of a miscarriage can be a difficult and painful experience, one that people often don't talk about even among friends and family. Women who suffer miscarriages can feel shame and isolation. Some even blame themselves.

There are also many public misperceptions of miscarriage. For example, more than half of the respondents to a 2015 survey incorrectly believed that miscarriages occur rarely, in 5 percent or less of all pregnancies. Actually, about 15 percent to 20 percent of clinically recognized pregnancies in the U.S. end in miscarriage each year. That brings the total number of miscarriages each year to somewhere between 750,000 and 1 million.

But the perception that miscarriage is rare and not something to be talked about may be changing. Last year, celebrities including rapper Azealia Banks, the singer Halsey and celebrity chef Gordon Ramsay publicly disclosed miscarriages, following other celebrities such as Beyonce and Mark Zuckerberg in previous years. There were also news articles in popular publications such as Time magazine and The Washington Post regarding personal experiences and the need to break the shroud of silence surrounding miscarriage.

As public health researchers, we wanted to find out whether these public conversations have had an impact on how people discuss and react to miscarriage.

Miscarriage studies tend to be small, because it is difficult to find women willing to participate. So we decided to look at one space where public conversations are taking place: social media. Given that many people use social media to share their feelings and thoughts, it was unsurprising to find discussion of miscarriage on platforms such as Facebook and Twitter.

For our study, we focused on Twitter. We gathered tweets posted from January to December 2016 that mentioned the term "miscarriage" in reference to pregnancy loss. We grouped those 55,698 tweets into four topics: celebrity miscarriage news; op-ed articles and politicized discussions; potential causes; and personal or familial experiences.

"I got my period for the first time after my miscarriage and I think my body is actually punishing me for not having one for two months," wrote one user. Another posted, "If someone becomes pregnant DO NOT TRY TO EMBARRASS THEM. There's a life inside them and stress can cause a miscarriage, which is horrible."

When we plotted the daily number of tweets about miscarriage, we noticed that there were multiple peaks over the time period studied. Several of these were associated with celebrity disclosures. So, we investigated the disclosures of miscarriage by celebrities a bit further. We extracted from Google News the date of the first news story mentioning the miscarriage experience for each of the 10 celebrities captured in our data. We found that the number of daily tweets about miscarriage during the week after a celebrity's disclosure was, on average, higher when compared with other weeks — 210 tweets per day versus 163.

Respondents to the 2015 survey on miscarriage indicated that disclosures of miscarriage by public figures as well as family and friends could lessen feelings of isolation for those who have had a miscarriage.

We also wanted to look further into how women disclose their own experiences with miscarriage on social media. We searched for tweets containing the phrases "my miscarriage," "I had a miscarriage" or "I miscarried." We then classified the emotional sentiment of each tweet into the following categories: grief, anger, relief, isolation, gratitude, annoyance and neutral.

Of the 309 people who tweeted about their own experiences, more than 60 percent expressed feelings of grief, 5 percent expressed anger and 3 percent expressed relief. About 18 percent of tweets had no specific emotional sentiment and were classified as neutral. Several of the tweets were simple disclosures: "Friends, I miscarried." We wondered whether these were perhaps aimed at encouraging public discussion.

Other women expressed feelings of isolation or desire for support, gratitude for support, and annoyance toward insensitive comments and treatment by others on Twitter. Among the comments considered insensitive were suggestions that there will be future opportunities to have a baby or that it was not the appropriate time to have a child.

Women who discussed miscarriage in the context of a post-miscarriage pregnancy expressed relief at conception or anxiety about the possibility of another miscarriage. Close to 5 percent of women assigned blame for their miscarriages, citing a wide range of factors including eating disorders, being overweight, unhealthy food consumption, their body, genetics, infertility, birth control or stress. Some tweets suggested that supplements and acupuncture could prevent miscarriages. This is not true.

In fact, the American College of Obstetricians and Gynecologists says about 60 percent of miscarriages are due to chromosomal abnormalities -- genetic problems that happen by chance.

Given the increased prevalence of fake news and misinformation on social media, it was important for us to see what information about miscarriage is being shared and whether this information is accurate. Our hope is that data from social media, including what we gathered from Twitter, can help health care professionals learn what information is circulating, make sure patients know the true causes of miscarriage to lessen guilt and shame, and better support patients in a time of grief and stress.

Elaine Nsoesie is an assistant professor of global health and Nina Cesare is a researcher at the Institute for Health Metrics and Evaluation at the University of Washington. You can find them on Twitter at @ensoesie and @nlcesare.

Dr. Karen D. Hendricks-Munoz, Alyssa Ward and Abraham Flaxman also contributed to this work.