Last year, after excruciating pain left Jane, an unnamed Yale student, bedridden with cramps every month for half of her life, she was finally diagnosed with polycystic ovarian syndrome, or PCOS. PCOS is a hormonal disorder that results in bouts of prolonged bleeding and horrific cramps, potentially causing infertility. Not much changed after Jane was finally diagnosed. For one, PCOS is one of the most underdiagnosed disorders in the medical field, even though one in 10 women of childbearing age have it. Look up information about this disorder, and you are sure to find a variation on this line: “The cause of polycystic ovary syndrome isn’t well understood.” This is the same with premenstrual dysphoric disorder, where “researchers don’t know the exact cause of PMDD.”
This issue is not just localized to menstruation. Rather, a lack of information bleeds into the rest of female reproductive health. As writer Marni Jackson recounted in a 2003 article, a 1999 Gallup Poll found that 46 percent of American women reported living with chronic pain, compared to 37 percent of men. What’s more is that when it comes to diagnosing female pain, a 2001 report in The Journal of Law, Medicine & Ethics found that doctors were more likely to count female pain as “emotional” or “psychogenic.” The report continued that when women ranked their pain as an eight out of 10, doctors tended to translate this into six out of 10. Why, in the year 2018, do we still have difficulty speaking about menstruation and female reproductive health? Why is it that knowledge about menstruation and the pain that comes with remains convoluted and is even brushed off as inappropriate? In order to answer the first question, it may be helpful to look toward history.
Certain disorders, whether mental or physical, have been gendered and racialized throughout U.S. history. Oftentimes, this sociopolitical tactic has resulted in dark consequences. J. Marion Sims, also known as the “father of modern gynecology” left his legacy through medical textbooks, history books and monuments all over the United States. Until just this decade, the routes Sims took to develop surgical techniques went entirely unquestioned. He created a cure for vesicovaginal fistula, a complication of prolonged labor where a tear between the vagina and bladder occurs, leading to an inability to hold in urine. His research involved performing experiments — not treatments — on slave women loaned to him as specimens. Women like Lucy, Anarcha and Betsey were experimented on without consent, anesthesia or even simple morals. Sims could do so because of a prevailing belief at the time: that black women could not feel pain. This example is just one gross instance of a time when those in the medical field were conditioned to view marginalized bodies as less human, even inhuman. Research and experiments on syphilis; injections of plutonium, uranium, and fenfluramine; and the removal of female reproductive organs without knowledge and consent attest to the mindset that marginalized bodies do not deserve respect. This mindset was a part of the formation of modern medicine and continues to persist, even today. These experiments served more to the doctors’ fetishizing curiosity rather than to a desire to advance medicine for the good of humankind.
To this day, the biases that stem from this dark history wreak havoc on black women at alarming rates. Regardless of wealth, beauty or respectability, black women in 2011–14 were 243 percent more likely to die in childbirth than white women. The deaths and near-death experiences of black women, like Kira Dixon Johnson and Serena Williams in the recent news should be a striking reminder of just how near history really is. Johnson, for one, died due to a ruptured blood vessel that could’ve been easily fixed. Johnson’s visible state of shock from the three and a half liters of blood collecting in her abdomen and her husband’s pleas were all met with a “Sir, your wife is just not a priority right now” from the hospital staff.
It is not necessarily the case that slavery and malicious medical experiments are the only reasons why society stigmatizes menstruation and believes that people are lying about period pain. However, this history lives on in the lack of research surrounding menstrual pain — why is it that for every scientific study about PMS, there are five for erectile dysfunction, even though only 19 percent of men report suffering from erectile dysfunction, while 90 percent of women report going through PMS? The lack of research, funding and conversation around menstrual issues leads to many people feeling alone in their suffering, feeling unable to miss class for fear of looking weak or lazy, feeling unable to get a Dean’s note because of their doctors’ unwillingness to consider that ibuprofen or birth control may not be a sufficient cure. This dark and ethically bereft medical history influences how pain continues to be misconstrued in marginalized bodies, even today.
As Jane put so simply, “If it affects one out of 10 women, why don’t we care?”
Nyamal Tuor is a junior in Morse College and events coordinator for the Women’s Center. Contact her at nyamal.tuor@yale.edu .