“But for pain words are lacking. There should be cries, cracks, fissures, whiteness passing over chintz covers, interference with the sense of time, of space; the sense also of extreme fixity in passing objects; and sounds very remote and then very close; flesh being gashed and blood spurting, a joint suddenly twisted — beneath all of which appears something very important, yet remote, to be just held in solitude.” –Virginia Woolf, The Waves

In a recent NPR piece, “Invisibilia: For Some Teens With Debilitating Pain, The Treatment Is More Pain,” readers are introduced to Devyn, a 14-year-old who develops intense bodily pain, seemingly out of nowhere. In search of the source of the pain or a cure, Devyn’s mother Sheila takes her to doctor after doctor. Each time, medical professionals tell Devyn, “‘You are healthy. Nothing is wrong,’” until, eight months later, when Sheila finds Dr. Sherry, a man responsible for a highly controversial treatment for pain: inflicting more pain.

As reported in the NPR piece, patients of Dr. Sherry’s “do physical workouts five to six hours a day.” All medicine, “even medication for apparently unrelated problems” is taken from patients. When Devyn experiences an asthma attack on the first day of practice, she is “directed…to simply walk around the gym” rather than take her inhaler.

At the end of the piece, Devyn claims to have been cured by Dr. Sherry’s program — she “even went back to dancing.” But for many readers, the essay was infuriating, unethical even. Maya Dusenbery, author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, called the piece “irresponsible” and generated a list of 12 questions that journalists should have asked experts, including “An asthma attack and a nosebleed are not pain complaints. What possible justification was there to ignore these problems in Devyn?”

Abby Norman, author of Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, tweeted that while she hadn’t been a patient of Dr. Sherry, she had tried swapping “one pain for another more intentional pain” and “just ended up with twice as much pain and a deep feeling of failure and shame that I couldn’t get ‘better’ and ‘beat it’ and ‘be normal.’” Norman is not alone in the ways she tried to ignore pain rather than accepting and learning to live with high levels of physical discomfort. Women’s symptoms — particularly pain, which is invisible — are often dismissed, disbelieved or diminished by doctors. Even when women do voice what’s happening with their bodies, they often do not receive treatment or even an acknowledgment of what’s ailing them.

Norman, in response to a series of questions I asked her about pain, wrote that she received pressure from “everywhere — doctors, friends and family, society” that “if you aren’t actively trying to get better, you’re wrong. If you aren’t making strides at getting well, you’re wrong. If you’re failing, if you stay sick, if your pain is still there, not only have you failed but you must want to be this way. Maybe you’re even faking it. Or making it worse than it really is.”

Women, in particular, are subject to this type of blame from doctors and others. As Norman notes, “on a sociocultural level, there are a lot of messages specifically undermining a woman’s interpretation of her own mind, body, and experiences. Not just in terms of physical pain, either. Where it becomes difficult (and in some cases life-threatening) is that the overarching patriarchal structures under which healthcare systems of the world operate, the very long history of misogyny in the medical profession and in our culture at large, vigorously and consistently reinforces these messages.”

Knowing this, how do we begin to change the narrative of how women’s pain is perceived, understood, and treated? How might we validate the experiences of women who have been repeatedly and systematically ignored, dismissed, and blamed by medical professionals and society at large? How do we treat pain without inflicting further physical and emotional harm?

I don’t think there are easy answers, but we can work to support initiatives dedicated to create lasting change to correct data that demonstrates the pain of women — affected even further by factors such as race, class, and weight — is routinely disbelieved by medical professionals. We can examine the language used to express and treat women’s pain, and work to find a vocabulary that allows us to rewrite the current narrative. We can listen carefully to women with histories of pain who write or speak about their experiences and heed their calls to action.

1. The Long History of Discrimination in Pain Medicine (Sarah Zhang, February 28, 2017, The Atlantic)

“The emergence of objectivity influenced the stigma around patients who suffered from pain without visible injury—and this stigma ends up overlapping with stigma that already exist along race, gender, and class lines.”

According to bioethicist Daniel Goldberg, author of a recent paper, “Pain, objectivity and history: understanding pain stigma,” the 19th century brought new instruments like the X-ray, which allowed for an “objective” means of understanding previously unseen pain, and these developments forced a reckoning with the way doctors had previously understood patients and the body. Sandra Zhang interviews Goldberg in order to learn more about how histories of racism, sexism, and classism have influenced the way doctors treat patients today.

2. I’m a fat Black femme searching for a doctor who believes my pain (Dominique Norman, January 24, 2019, Hello Giggles)

“I’m Black, fat, and femme, living with a chronic physical illness and mental illnesses. I can tell you that self-advocacy in doctor’s offices is incredibly difficult when no one will listen to you.”

Histories of racist practices in medicine such as the Tuskegee experiment or cells taken from Henrietta Lacks without her consent have left lasting negative impacts on the way black women are treated by medical professionals today, as Dominique Norman explains in her personal essay about being disbelieved and dismissed by a variety of doctors for years on end.

3. Grand Unified Theory of Female Pain (Leslie Jamison, Spring 2014, Virginia Quarterly Review)

“The pain of women turns them into kittens and rabbits and sunsets and sordid red satin goddesses, pales them and bloodies them and starves them, delivers them to death camps and sends locks of their hair to the stars. Men put them on trains and under them. Violence turns them celestial. Age turns them old. We can’t look away. We can’t stop imagining new ways for them to hurt.”

How can we talk about women’s pain in a way that is true to their experience? What kind of pain is perceived as “real” and what kind is seen as a cry for attention? How can women write about their pain without adding to a history of narratives that have glamorized “wounded women”? By analyzing representations of women’s pain in art and literature, Leslie Jamison asks — and seeks to answer — these questions and more.

(Related: read “Writing Women’s Pain: Part Two of a Round Table, a conversation with Alethea Black, Abby Norman, Esme Weijun Wang, and more,” November 2018, 2018, Lit Hub)

4. Nothing Protects Black Women From Dying in Pregnancy and Childbirth (Nina Martin, ProPublica, and Renee Montagne, December 7, 2017, ProPublica and NPR)

Shalon Irving, who earned a dual-subject Ph.D. and worked to “eradicate disparities in health access and outcomes,” passed away at the age of 36, just three weeks after giving birth to her first child. As Nina Martin and Renee Montagne report, Irving’s death is representative of a much larger issue: black women are “243 percent more likely to die from pregnancy or childbirth-related causes.”

“Black expectant and new mothers frequently told us that doctors and nurses didn’t take their pain seriously — a phenomenon borne out by numerous studies that show pain is often undertreated in black patients for conditions from appendicitis to cancer.”

5. Pain bias: The health inequality rarely discussed (Jennifer Billock, May 22, 2018, BBC)

As happens to many women who have valid symptoms, Jennifer Billock was told by her doctor that she was “paying too much attention” to her body — he recommended she go home and relax.

“I still left his office thinking it was perhaps anxiety. And so, listening to the advice, I tried to ignore the pain.”

Billock explores the numerous ways in which women’s pain is dismissed and discredited throughout this piece, and also why.

6. It’s All In Your Head: The Dangers of Disbelieving Female Pain (Caroline Reilly, July 6, 2016, Bitch Magazine)

Caroline Reilly feels a sense of relief when she wakes from surgery and a medical professional tells her they “found a lot” of endometriosis within her. Her pain, previously disbelieved, was now validated by a name. Reilly, through research studies and personal experience, advocates for women’s pain to be legitimized.

“The disbelief of female pain is well documented. “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,” a 2001 study in the Journal of Law, Medicine & Ethics, documents how women are given less pain medications than men for the same procedures. On the other hand, the study notes that women are more likely to be given sedatives—as women are more often perceived as anxious than in pain. Women also wait longer than men in emergency rooms.”

7. Black Health Matters (Jenna Wortham, August 27, 2016, The New York Times)

“In April, a study by researchers at the University of Virginia found that African-American patients were routinely undertreated for their pain, compared with white patients. Ultimately, black patients were conditioned to underestimate their own pain.”

Plagued by a mysterious rash and other health concerns, Jenna Wortham visits several doctors and an emergency room before her acupuncturist asks if her condition might be related to stress. Upon reflecting on the overwhelming trauma she encounters daily in her newsfeed, Wortham discovers Simone Leigh, “a renowned artist with a history of examining social movements and black subjectivities, with a focus on women,” and works to “deal with the psychological toll of racism” through practices such as yoga and acupuncture.

8. Treating Migraines: How Women are Harmed by Gendered Medical Language (Rachel Mabe, February 6, 2018, Catapult)

“So the question is: Does the stigma of migraines as a women’s disease, and the stereotypically feminine language still used to talk about them, affect patient treatment? Does it affect how much time and money are spent on studying migraines?”

Rachel Mabe seeks to answer these questions by sharing the story of Patty, a woman who experiences “twenty-two headache days a month,” analyzing words such as “oversensitive” used to describe women’s migraines, writing about her own experience with incapacitating headaches, and examining how the gender biases present within the history of language related to migraines has contributed to the way migraines remain understudied.

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Jacqueline Alnes is working on a memoir about running and neurological illness. You can find her on Instagram and Twitter @jacquelinealnes.