I have a rare and painful genetic respiratory disorder called primary ciliary dyskinesia. I was 23 when doctors diagnosed my condition, but I had been sick my whole life. Again and again, I was told that I was suffering from nothing more than stress — that it was all in my head.
This is a common experience for young women. We have long known that women with some conditions are more likely than men to be under-treated for pain, and that doctors are more likely to dismiss reports of illness as psychosomatic when they come from women. Now, a recent study from Yale researchers shows how early this gender bias starts. The study found that when adult participants were asked to rate the perceived pain of a child receiving a finger prick to draw blood, they attributed more pain to the child they thought was a boy than they did to the child they thought was a girl.
The study’s authors associate these findings with “explicit gender stereotypes” that characterize men as more stoic about their pain and women as more emotional — and therefore, less credible.
An estimated 20 to 35 percent of adolescents experience chronic pain. According to a 2017 study, doctors are significantly more likely to dismiss the pain symptoms of young female patients than those of male ones. This can cause lasting damage to the relationships between doctors and their parents.
Endometriosis is a useful if sobering frame for viewing the consequences. Up to one in 10 women have endometriosis, a painful, debilitating condition in which tissue that normally lines the uterus instead grows outside of it. Symptoms can begin in adolescence, but young women are often told they simply have painful periods. It can take years to get a diagnosis. The longer it takes, the more women suffer, and the harder it becomes to treat the condition.
Many of the young women with chronic pain I’ve interviewed have stories about this culture of disbelief. They are often told their pain is caused by stress. Repeatedly finding themselves ignored can chip away at their self-confidence. Over time, fear of being seen as whiny or weak led some young women to underreport their pain, making it even harder to get treatment.
One patient described being “shy, unwilling and unsure of how to stick up for myself.” For years, she said, “it didn’t occur to me that I could argue with the doctor’s results, even if they were contrary to what my body was telling me.”
But this isn’t just about the young female patient in pain and how doctors respond to her. It is about the young woman narrating her suffering, and how we all respond to her.
Consider sexual harassment. The American Association of University Women surveyed nearly 2,000 students in grades 7 to 12 and found that nearly half reported having experienced some form of sexual harassment. Girls were significantly more likely than boys to be harassed, girls’ harassment tended to be more physical and intrusive, and girls reported more longer-term consequences, like trouble sleeping and increased absences from school.
Just 12 percent of girls who experienced harassment reported it to an adult at school, most likely for reasons including fear of not being believed, fear of retaliation and social isolation, the failure of schools to respond, and confusion about what actually constitutes harassment.
Girls have good reason to feel this way. Take the case of Dr. Larry Nassar, the notorious Michigan State University and U.S.A. Gymnastics physician who was sentenced last year to 40 to 175 years in prison for sex crimes. Michigan State was first alerted to concerns about Dr. Nassar back in 1997, but the complaints were ignored. When he finally faced a trial, many of his more than 160 victims described the lasting negative impact of having their experiences invalidated by the adults in their lives.
The #MeToo movement has done a lot to encourage women to share their experiences, and we now need those conversations to translate into meaningful institutional and cultural changes. The research on how little we acknowledge young girls’ pain suggests we need to start with something basic: When girls tell us about their experiences with their bodies, we need to listen.
Laurie Edwards is the author of “In the Kingdom of the Sick: A Social History of Chronic Illness in America.”