The medical community has a gender bias, putting women at a disadvantage when they’re literally screaming for help.
There’s a haze over the window of my memories in my 20s: Certain details and entire days that I can’t recall. “Don’t you remember how we could barely go hiking?,” my best friend asks me. “Remember all those days you called me crying in pain?,” my mother will remind me. I’m silent because I’ve blotted out those days: Days where my pelvic pain made it difficult to wear my favorite jeans, do strenuous activities, sit for long periods, have sex—because now in my 30s I have convinced myself that much of the pain I experienced was in my head.
It’s a story women have been telling themselves for millennia, largely due to society’s dismissal of women’s pain. The word “hysterical,” after all, comes from the Latin term hystericus or “of the womb,” and the Ancient Greeks believed hysteria was caused by a disturbance in women’s uteruses. Our wombs, and thus, women have been permanently linked to society’s views of emotional excess, instability, and delirium. We are told we are not in pain, we are being overly dramatic, emotional.
This narrative is familiar one for Feministing.com’s Maya Dusenbery the author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, published this month by HarperOne, which examines sexism in healthcare. Dusenbery writes about women’s pain and illnesses being overlooked because of their menstrual cramps, menopause, even entering motherhood. In her introduction, she notes: “Fat women report their ailment is blamed on their weight; trans women find that all their symptoms are attributed to hormone therapy; Black women are stereotyped as addicts looking for prescription drugs, their reports of pain doubted entirely… there is often the same current of distrust: the sense that women are not very accurate judges of when something is really, truly wrong in their bodies.”
The problem with people not believing women’s reports of illness and pain is that we start to doubt ourselves, and when women start to doubt ourselves our lives are literally at risk.
Dr. Jennifer Wider is a spokesperson for the Society for Women’s Health Research and she points toward numerous telling studies—as well as litagations—on women coming into the emergency room with heart attack symptoms and not being treated properly. “They were actually told that they were having a panic attack, or having symptoms under the umbrella of anxiety rather than being treated expediently for a heart attack,” Wider said. “So a lot of women were sent home in a cardiac arrest being told that they had anxiety when really they were not.”
According to the Centers for Disease Control and Prevention more women in the U.S. die from cardiovascular causes—heart disease and stroke—than from all forms of cancer combined. And consider this: A 2015 report by the American Heart Association, reveals that heart disease has decreased in all age groups in the last 20 years, except for “young women” (women younger than age 55), which has hit a plateau.
Wider acknowledges that gender bias within medical school is a problem, too. “There needs to be a ton of education to teach both male and female medical students, and healthcare personnel alike, that different diseases different conditions affect men and women differently, and that they affect different cultural groups differently,” Wider said. “There isn’t a one-size-fits-all approach.”
The sentiment is one that novelist Porochista Khakpour can get behind as the author of the forthcoming memoir Sick (Harper Perennial), which details her plight with Lyme disease. Khakpour recently told Prairie Schooner magazine: “It takes women ages to get treated because they get labeled psychiatric cases and that’s it … but I know my body, I know how I am when I am anxious and depressed.” She says that women often end up being sick longer because society doesn’t hear them, or believe them, and they second-guess their symptoms.
This was the case for acclaimed author Laura Hillenbrand (Seabiscuit, Unbroken), who has been suffering from Chronic Fatigue Syndrome since 1987. She was struck with a sudden illness when she was a sophomore in college, and became so sick she had to drop out. For several years she was dismissed by doctor after doctor who didn’t believe her symptoms. One directed her to a psychologist, others accused her of having an eating disorder, and nearly all of them flat-out didn’t believe she was sick. “I was 19 years old. I am petite, I am skinny, I was 103 pounds … I was very girlish looking and I had a high voice,” she told me. “I don’t think I presented myself in a manner that would combat a sexist idea of me. I quickly learned to don professional clothing when I went to the doctor, and how to speak in a manner that would convey my intelligence and competence.”
A patient with Chronic Fatigue Syndrome may be in extreme pain while showing no obvious signs of disease—and a diagnosis is still not available with a blood work test. She was one of the first public voices to come forward with the disease’s struggles in a stunning 2003 New Yorker essay, and because of this she says she has become a “sort of poster girl” for the disease. Now more than a decade and a half after her article was published, not a week goes by where she doesn’t hear from a reader who found her essay and is also struggling with Chronic Fatigue Syndrome. “I’ve gotten thousands of emails and letters, and I speak to a lot of people who suffer from it … I don’t know how many thousands of women have told me that they were not taken seriously,” she said. The men she has talked to in comparison, she says, had no problems being believed.
In fact, compared to men, women report more cases of chronic pain and when they report acute pain they are more likely to be prescribed with sedatives rather than pain medications.
What further complicates the pitfalls that come with the gender bias of pain is that it is well-documented that scientists know less about women’s bodies than men’s bodies. For example, when it comes to clinical trials female subjects were mostly excluded for decades up until recently. In 1977, Food and Drug Administration guidelines banned clinical trials that included women who had the potential to become pregnant because they might be developing birth defects. It wasn’t until years later that this recommendation began to raise important ethical and legal questions, including a backward assumption that women could not take steps to avoid becoming pregnant to take part in a study. However, the majority of the science community mostly didn’t question this omission because most believed that the only thing separating women and men as study subjects was their reproductive differences.
It gets wilder: Relying on solely men for clinical trials didn’t begin to reverse until as late as 1993, when the government established new guidelines for study that included women. And yet when it comes to chronic pain—which it is estimated is experienced by more women than men— 80 percent of clinical studies that involve pain are conducted on male animal subjects or human men.
If the science community doesn’t fully understand women’s bodies—and our pain—how are we supposed to be able to explain what is happening in our bodies when something goes awry?
I often think about what my 20s would have been like if I believed that my pain was valid: Would I have been more confident? Would I have been less stressed? Would I better remember more intimate moments with my then-partner when he tenderly listened to my panic about my health? Much of the latter part of our relationship comes up blank. I know that I self-sabotaged it—and other relationships—because I felt that this throbbing, invisible health ailment was made-up, and I felt unworthy of affection. It took years but I eventually got better by a combination of physical therapy, careful exercise, and learning to be more connected with my body. Ten years later, vulvodynia, my condition’s name (which is sometimes referred to as the fibromyalgia of the vagina), is a more common diagnosis that can be found with a quick Google search that brings up scores of thoughtful articles on the elusive health condition, defined by the National Vulvodynia Foundation as “chronic vulvar pain without an identifiable cause.”
The tide is turning for women’s health—and not just for my condition—as more and more stories about women enduring pain are coming out, from Hillenbrand, Dusenbery, and Khakpour, as well as science writer Abby Norman, whose memoir, Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain (Nation Books) is out this month. In it, she shares her struggles for receiving a diagnosis for her painful endometriosis condition, the deep-rooted history of female pain being ignored by an all-male medical system, and that in order for a woman to live healthy today we must still battle a patriarchal medical system to be heard.
Our greatest advocates remain ourselves, and our sisters. Female celebrities are adding their voices to the much-needed megaphone that’s calling out gender bias in medicine. I’ve long admired Top Chef goddess Padma Lakshmi for being public about her difficulties dealing with endometriosis, along with stars such as Lena Dunham and Whoopi Goldberg who struggle with the same painful condition, which is caused when tissue that normally lines the inside of the uterus grows outside the uterus. These accomplished women’s openness with their health issues makes those of us who have grappled with often-intangible pain, whether it’s migraines or excruciatingly painful periods, feel less alone.
One silver lining of the United States’ devastating opioid epidemic is that it is bringing the need to understand the origins of pain into sharp focus. Add to that the #MeToo movement in which we are finally forced to listen and hopefully starting to trust women’s experiences with sexual harassment and abuse, and we are at a nexus of possible change. Women have been sharing stories about their pain not being believed by the medical field for centuries. What’s new is that our internet culture has created a platform for them to be told en masse and when this is accompanied by media attention women’s experiences become harder and harder to ignore, and even start getting validated. Is the time now up for believing women when we are in pain?
It’s not just about the stories. Journalism is also about who is telling them.
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