Last year, writer Joe Fassler published a harrowing essay in The Atlantic detailing his wife Rachel’s trip to the emergency room for for excruciating pain. The cause: A massive cyst was weighing down Rachel’s ovary, bending the fallopian tube “like you’d wring out a sponge,” Fassler wrote.
Before they knew this, though, they waited: through a long stretch in the ER waiting room, through a misdiagnosis (kidney stones), through face time with a doctor who didn’t think to perform a gynecological exam. By the time another physician hit on the correct diagnosis, Rachel’s ovary was too damaged to save. Traumatic as it was, Fassler wrote, Rachel’s story was just one instance in a pattern that plays out across our health-care system each day: Women often have to fight to get their pain taken seriously.
Which is likely why a piece published in Slate earlier this week, titled “Is PMS Real?”, seemed to strike such a nerve. The story was an excerpt from Frank Bures’s book The Geography of Madness: Penis Thieves, Voodoo Death, and the Search for the Meaning of the World’s Strangest Symptoms, which came out earlier this year. In it, Brunes argued that premenstrual syndrome, in which women experience monthly bouts of physical or mood-related symptoms leading up to their periods, is an example of a “culture-bound syndrome” – a condition that wasn’t inherently biological in nature, but rather a “figment of our menstruation-fearing” society.
“If it is a syndrome,” Bures concluded, “it’s most certainly a cultural one.”
The second part of that statement is true enough. Medicine, after all, doesn’t exist in a vacuum — the way we relate to our minds and bodies, and the way we conceptualize illness, is shaped in large part by culture. In China, for example, depression is more physical than it is in the U.S., often causing symptoms like headache and muscle pain.
And Bures cites some pretty fascinating research suggesting the same thing may be at work with PMS, including the finding that women who believe more strongly in traditional gender roles seem to experience more severe symptoms. But then there’s the first part of that statement: if it’s a syndrome. As gynecologist Amy Tuteur wrote in her blog The Skeptical OB, “The fact that the response varies among cultures is not proof that the syndrome itself exists only in the minds of its sufferers.”
Besides, whether or not PMS is influenced by culture feels like the wrong question. A better one might be: Why should that cast any doubt on its existence? The answer depends on whether we want to put PMS on trial for things we readily accept in other circumstances.
In one experiment, Bures wrote, “women who were misled to believe they were premenstrual experienced more symptoms of PMS than those who were actually premenstrual but who were misled to believe they were not.” Well, sure. Suggestion is a powerful force, and our minds are shockingly malleable. People who are misled to believe that they’re drunk also experience symptoms of drunkenness, but that doesn’t cancel out the fact that inebriation from alcohol is a real thing.
To be fair, our understanding of PMS is glaringly imperfect. The American College of Obstetricians and Gynecologists estimates that around 85 percent of women will experience at least one symptom of PMS over the course of their menstrual cycle, and yet scientists still don’t have a definitive list of those symptoms — or, for that matter, a concrete knowledge of what causes PMS in the first place. Possible factors that make some women more susceptible than others include hormonal fluctuations, or brain chemicals, or genetics, or lifestyle, or some combination of any of the above.
And with only the fuzziest of understandings, the best method we have for defining PMS is through the reported experiences of the women who suffer from it — a method that forms the basis of how we understand a host of other, undisputed conditions. Unlike drunkenness, or an infection like the flu — both of which have a clear, concrete cause, in the form of a chemical or a pathogen — most entries in the DSM, the diagnostic bible for mental illness, are defined by their symptoms. Anxiety, for example, is diagnosed by the presence of excessive, uncontrollable worry, and schizophrenia is diagnosed when a person has any two of these five signs: hallucinations, delusions, “disorganized thinking,” abnormal patterns of movement, and “negative symptoms,” like lack of motivation or interest in socializing. In both cases, the condition and the collection of symptoms are one and the same.
Bures almost — almost — makes that same point: “Just because something is a social construction does not mean we don’t experience it,” he wrote. “It simply means that our ‘real’ physiological symptoms can have roots in our mind as well as our body.” But there’s a subtle difference between this is a real experience and this is a real condition deserving of medical research and care. (There’s a less subtle difference between real and “real” in scare quotes.)
And as a growing stack of placebo research demonstrates, it’s a tricky thing to say that a condition is caused x amount by the mind, and y by the body. The lines between the two can be bafflingly blurry.
While we’re on the subject, the placebo effect is also culturally bound — a study last fear found that it’s been growing stronger since the 1990s, but only in the U.S. And the reality of placebos, to state the obvious, is not something that’s up for debate.
Which brings us back to Fassler’s story. In 2001, researchers from the University of Maryland published a review in the Journal of Medicine, Law and Ethics titled “The Girl Who Cried Pain,” examining gender differences in the experience and treatment of pain. “We conclude, from the research reviewed, that men and women appear to experience and respond to pain differently,” they wrote, “but that determining whether this difference is due to biological versus psychosocial origins is difficult due to the complex, multicausal nature of the pain experience” — including discrepancies in how health-care providers respond to their patients. Women are more likely than men to seek treatment for pain, the authors explained, “but are also more likely to be inadequately treated by health-care providers, who, at least initially, discount women’s verbal pain reports and attribute more import to biological pain contributors than emotional or psychological pain contributors.”
It’s a discrepancy that exists at all levels of treatment. On average, women who go to the emergency room for acute abdominal pain wait more than 15 minutes longer than men before receiving relief. In cardiology, the term “Yentl syndrome” describes doctor’s tendency to misdiagnose women’s heart attacks as lesser problems. And as the New York Times has reported, young girls with endometriosis, a condition that most often affects adult women — and whose symptoms include, among other things, painful periods — often suffer undiagnosed for years, “largely because many physicians do not believe the disease affects teenagers.”
A tendency to dismiss or diminish the pain that women experience — that’s a syndrome, and most certainly a cultural one.