Maya Dusenbery

12 questions about that article on treating chronic pain with more pain

The fact that Serena Williams, who’d nearly died of a pulmonary embolism in 2001, who had just had a C-section which increases the risk of blood clots, and who is Serena goddamn Williams, who is rich and famous and is rich and famous specifically for the spectacular feats of her body, had to identify her symptoms herself and demand the screening needed for a potentially deadly complication is an incredible illustration of the deep sexism and racism that black women face in the medical system.

It can, I think, be difficult for those who don’t live it to fully grasp that it’s the cumulative effect of these experiences, individual and collective, big and small—which is visually represented nicely by the stream of posts in our Facebook and Twitter feeds this week—that’s so damaging. And it’s also this: the perpetual uncertainty about when the “minor” stuff might turn into the “major” stuff, and how the latter gives the former far more power. My own experiences being harassed on midwestern streets and NYC subways are nothing like being raped, of course. But a cat-caller is only scary at all because we don’t know when one might follow us home. And a guy who aggressively pushes for sex wouldn’t make us so queasy if we felt 100 percent sure he’d listen if we said no. I hope that men see every “me too” post as representing a very good reason—and usually more than one—for all women not to trust men. #YesALLmen because it’s precisely that uncertainty—and the consequent need for constant guardedness—that’s so corrosive. If being distrustful of a whole gender strikes you as terrible and unfair—well, yes, that it absolutely is.

What if men bore six times the economic cost of Alzheimer’s in the U.S? What if it was mostly men who devoted a total of $17.9 billion of unpaid care to a loved one with the disease last year? What if it was mostly men—many of them in the prime of their careers and raising kids to boot—who were forced to take time off from work, take a less demanding part-time job, or quit altogether to provide this care? What if it was mostly men who saw their own emotional and physical health suffer for it—to the tune of $9.7 billion in increased health-care costs themselves? How much more quickly would public pressure build for reforms to lighten the load? For innovative new models to provide coordinated, long-term care for Alzheimer’s patients under Medicare and Medicaid; for an expanded workforce of well-compensated and well-trained professional caregivers; for access to affordable and not soul-crushing assisted living facilities and nursing homes for all; for a federal paid family and medical leave law for those who want to take care of their loved ones themselves but can’t afford to sacrifice their incomes to do so. How long would it take, in other words, for this care to be transformed from a private burden to a public one? How long before more and more of the estimated economic value of this unpaid labor—$217 billion annually—was shifted onto insurance companies and government entitlement programs and employers? If it were—if the market lost this subsidy—the annual economic cost of Alzheimer’s would nearly double. How seriously would we take it then?

What makes these stories so horrifying is the thread of almost Dickensian economic coercion running through them. Sure, some women may be able and eager to get back to a beloved career ASAP after childbirth—like Yahoo CEO Marissa Mayer, who recently announced she’s having twins and plans to take “limited time away and [work] throughout” her pregnancy and delivery. Others who could technically take more time off may feel pressured by the 24/7 workplace culture at so many American employers to return sooner rather than later. But only desperate financial necessity drives someone to do so when they’re still bleeding from major abdominal surgery. Indeed, there’s a clear class divide between mothers who are forced to get back to work early and those who aren’t. In the 2012 survey Lerner cites, 80 percent of college graduates took at least six weeks off, while only 54 percent of those without college degrees did so. It’s a reality that can be sometimes overshadowed when the conversation around maternity leave focuses on how much worse off all American women are compared to their counterparts in, well, nearly every other country in the world: The impact of our terrible federal family leave mandate does not fall evenly. And as elite employers—like Microsoft, Netflix, and Adobe, to name the latest—are increasingly competing for talent by announcing generous paid family leave policies, the disparity is destined to grow. Netflix’s new much-criticized two-tier parental leave policy—12 months for well-compensated, salaried employees on the digital side but just 12 weeks for the lower-paid, hourly workers shipping DVDs—reflects the reality in the U.S. economy writ large: We may be a nation of paupers when it comes to support for working parents, but there are still haves and have-nots.

Feminist critiques of modern medicine have long noted that, particularly when the cause of an ailment is unknown, doctors default to a psychological explanation in women more than in men. There are certainly some factors that may heighten this tendency when it comes to heart attacks. After all, only 20 percent of people who come to the ER with chest pain are actually having a heart attack. There is also clear symptom overlap between a heart attack and an anxiety attack, and younger women are at relatively lower risk for the former and higher risk for the latter. This reality, the Yale researchers suggest, might contribute to “initial triage strategies to attribute symptoms to non-cardiac conditions” in young women. One cardiologist put it more bluntly: "In training, we were taught to be on the lookout for hysterical females who come to the emergency room.” But to a large degree, that sentiment reflects the kind of treatment many women receive from the health care system as a whole. The fact that psychological problems, like anxiety disorders and depression, can have a wide range of “non-specific” symptoms means they can serve as remarkably plastic diagnoses. To take just a few examples from the experiences of young women I know: For a month, multiple health care providers insisted that a friend’s stabbing chest pain was likely just anxiety before they realized it was pericarditis, an inflammation of the lining around the heart that causes symptoms similar to a heart attack. Dizziness, wooziness, ringing in your ears, and floaters in your eyes? An infectious disease specialist suggested that another friend see a therapist for depression, when she was actually suffering from West Nile virus. Others have encountered physicians eager to play armchair psychologists and explain away the fatigue and widespread pain of fibromyalgia, and the abdominal pain and incontinence of a ureaplasma infection. This pervasive bias may simply be easier to see in the especially high-stakes context of a heart attack, in which the true cause usually becomes crystal clear—too often tragically—in a matter of hours or days. When it comes to less acute problems, the effect of such medical gaslighting is harder to quantify, as many women either accept misdiagnoses or persist until they find a health care provider who believes their symptoms aren’t just in their head. But it can be observed indirectly: In the ever-increasing numbers of women prescribed anti-anxiety meds and anti-depressants. In the fact that women make up the majority of the 100 million Americans suffering from (often under-treated) chronic pain. In the fact that it takes nearly five years and five doctors, on average, for patients with autoimmune diseases, more than 75 percent of whom are women, to receive a proper diagnosis, and that half report being labeled “chronic complainers” in the early stages of their illness. Then there are the diseases, like chronic fatigue syndrome and fibromyalgia, that exist so squarely at the overlap of the Venn diagrams of “affects mostly women” and “unknown etiology” that they’ve only recently begun to be recognized as “real” diseases at all.

Looked at from that angle, the fact that marrying your best friend seems to make middle age “slightly less terrible” (as the headline of the Washington Post’s coverage of the study sardonically boasts) seems less a ringing endorsement of marriage than an indictment of the way many of us spend our middle age—in socially isolated domestic units, each consumed with the nearly impossible task of balancing work and family, made bearable only by having a close friend in the trenches with us. PERHAPS NOWHERE IS THIS more true than in the U.S., where, despite the growing diversity of our families, our economic structures and work policies stubbornly cater to two-parent partnerships—and don’t even properly support those. Granted, some of the “stresses of middle age” that can be eased by marital friendship are probably inevitable—raising a child, caring for a dying parent, or facing the first evidence of your own impending mortality, for example, will never be easy. But, in the U.S., we seem to have all but given up on the possibility that at least one key challenge of this life stage—the fact that career and family obligations often peak at the exact same time—could, conceivably, be collectively solved. Instead, we accept ever-longer work hours, stagnating wages, astronomical child care costs, and laughable family leave policies, and then find, unsurprisingly, that more than half of working parents say it is difficult for them to balance their job and home responsibilities.

Roxane Gay wrote recently, “As a culture, we don’t seem to know how to hear stories about rape and sexual violence.” It’s possible we also live in a culture where journalism is not equipped to tell them. It’s possible that so long as journalism insists on some fiction of objectivity and refuses to really own up to its bias, the full and awful truth of sexual violence will continue to slip through its attempts to capture it. It’s possible the truth of sexual violence is too big — that it is too pervasive, too normalized within the culture, too deeply embedded in our most intimate relationships — to be counted by journalism’s statistics and illustrative anecdotes. It’s possible that the truth of sexual violence is too messy to fit within journalism’s narrative preference for perfect victims and villains. It’s possible we, as a culture, have too much invested in not believing the truth of sexual violence, and that until that changes, the risks survivors take by trusting their stories to journalism — to its limited tools for getting at the truth in which it is arrogantly overconfident — are just too great.

This, above all, is what Obvious Child does so well; by honestly and unapologetically showing one woman’s experience, it opens space for others. Ultimately, that ability to encourage—not stifle—the telling of more stories is the difference between a narrative that reinforces stigma and one that can help subvert it. Because as decades of stigmatizing Hollywood portrayals of abortion have demonstrated, a single story can be just as dangerous as silence. What is required to end abortion stigma is not just increased visibility but increased diversity—a range of stories so complicated and specific that they defy being slotted into easy boxes. To that end, we should think of greater representations of abortion in pop culture not as an end point in itself, Cockrill says, “but really a starting point for more conversation.”