Thankfully, many medical conditions that once were never discussed in public, such as cancer, AIDS, and even infertility, have largely shed their stigma and sense of secrecy.
Miscarriage holds an unusual place in medicine in being both common and something that many in society thinks is rare. One in four pregnancies ends in miscarriage, and there are 1,000,000 miscarriages each year in the U.S. — yet miscarriage remains shrouded in privacy and self-blame. Thus, there are huge numbers of women and couples who feel isolated and alone.
Because miscarriage is so rarely discussed, we wanted to get a better understanding of what members of the public thought about it: their perception of its frequency, causes and emotional impact. We also wanted to know what we as doctors and health care teams could do to help those who had suffered a miscarriage or even multiple miscarriages.
In the first national study on the perception of miscarriage, published May 11, 2015, in Obstetrics and Gynecology, we surveyed more than 1,000 U.S. adults from 49 states. Most respondents mistakenly believed that miscarriage was rare, occurring in less than 6 percent of pregnancies. A substantial number actually thought that it occurred in less than 1 percent of pregnancies, an astounding disparity compared with the actual incidence of 25 percent.
The study also helped clarify why so many women feel guilty after a miscarriage — they believe that their behavior somehow played a role. The false notion that stress, getting into an argument or lifting something heavy could cause a miscarriage was prevalent. The survey also revealed that the emotional impact of miscarriage was quite dramatic, with nearly one-quarter of those who had experienced one reporting that they felt as though they had lost a child.
Understanding the taboo nature of miscarriage
Why does miscarriage remain such a taboo subject? I wonder if a lot of it has to do with the ancient nature of the miscarriage. Many conditions that we have to contend with today — Alzheimer’s, cancer, heart disease — are largely ailments of old age and have become significant public health issues only in the modern era, when people are living long enough to develop them. Miscarriage, in contrast, has been a problem since ancient times, and thus much of the public’s thinking about it may have been formed long ago, in an age of folklore and myth and before the era of modern medicine.
Helping heal after miscarriage
So what can we do as health care providers, family members and friends to help those who have had miscarriages? The first thing may be to become more willing to share our own experiences and to discuss miscarriage more openly. In our study, when family, friends, public figures or celebrities revealed their miscarriage experiences, it helped reduce the feelings of isolation. Acknowledging the emotional pain of the miscarriage and not dismissing it would also be helpful.
Finally, finding a cause for a miscarriage, even if there was nothing that could have been done to prevent it, was found to be highly desirable by the respondents. Combining empathy with the rigor of scientific exploration could help lessen both the stigma and the incidence of miscarriage.
Zev Williams is director, Program for Early and Recurrent Pregnancy Loss (PEARL), Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, NY. He blogs at the Doctor’s Tablet.