On Being an Ill Woman: A Reading List of Doctors’ Dismissal and Disbelief

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Just months after I turned 18, I sat on the white crinkly paper of a patient bed, waiting for my first neurology appointment. I repeated, I am a Division I athlete, as if reminding myself of my athleticism would somehow erase the strange symptoms of fainting, blurred vision, and dizziness that had plagued me for the previous few weeks. The illness, like a flower from concrete, seemed inconceivable. I had been healthy my whole life.

The doctor rapped on the door, entered, and shook my hand before taking a seat. “The doc at your school called. Thinks you had a bad reaction to medication,” he said, referencing antibiotics I’d been prescribed for bronchitis. “He says you’ve had blurry vision, vertigo, two episodes of syncope.”

“Is syncope fainting?” I asked, feeling as though the language of my body had been translated into something incomprehensible. I wanted to snatch it back.

“Yeah, yeah,” he crooned. “You been running?”

“I’ve been trying,” I told him. Each attempt ended in a swell of vertigo and subsequent collapse. The assistant coach carried me to my trainer, who took my blood pressure and pulse, always murmuring, “you’re fine.” The athletic doctor assigned to our team, after performing several tests, had told me that I presented no abnormalities; he encouraged me to run.

The neurologist pulled out a mallet and tapped my knee. My lower leg reacted as it should, swinging forward like a pendulum. He told me to walk, and watched as I made my way from the bed to the door, and back again. “It’s fine for you to run,” he said, scribbling down notes. “I don’t see what’s holding you back.”

I left the appointment with a sense of unease. If the athletic doctor, a trainer, and a neurologist had seen me and told me I was fine, then was I really sick? At the time, I didn’t know how to advocate for myself while in the position of patient. I felt alone with my illness, scared of my own body.

Eight years have passed since then and, in my own continuing journey toward a diagnosis, I have felt a strange mix of emotions when reading narratives of other women being discredited by medical professionals. I feel outraged when I read about their attempts to voice symptoms, only to be silenced. Guilt — and a desire to work toward reforming our current medical system — washes over me when I am reminded of the extent of my own privilege.

The essays below are both a salve to the years of dismissal from doctors and a call to action. I’m inspired by other women’s efforts to advocate for themselves, practice radical empathy, change policy, and create resources so that other patients don’t endure the same harrowing experiences. When I hear my voice in chorus alongside them, I feel as though I’m somehow part of a community, or at least not alone anymore.

1. “PCOS. POC. Poetry. & Pilates” (Tiana Clark, Lenny Letter, April 13, 2018)

Tiana Clark tries to ignore symptoms of panic attacks, hair loss, brain fog, and more, until her ovary throbs with an excruciating pain that forces her to the walk-in clinic. There, a doctor waves Clark’s symptoms away with painkillers and, at an appointment with a white female gynecologist soon after, Clark’s self-diagnosis of polycystic ovarian syndrome (PCOS) is initially belittled.

Her casual dismissal of my problem reminded me of what I’d so often seen living as a black woman in America: an erasure of my distress.

In this incisive, empowering essay, Clark highlights researched material about black women’s health care in the U.S., relays her own harrowing experiences with medical professionals, and emphasizes the importance of learning to advocate for herself.

2. “Memoirs of Disease and Disbelief” (Lidija Haas, The New Yorker, June 4 & 11, 2018)

By examining female narratives of illness ranging from Virginia Woolf’s essay On Being Ill, Jennifer Brea’s documentary film Unrest, Susan Sontag’s canonical Illness as Metaphor, and Christina Crosby’s book A Body, Undone: Living On After Great Pain, among others, Lidija Haas reviews Porochista Khakpour’s Sick with an eye toward how storytelling can affect treatment, act as a form of escape, and undermine dangerous expectations of what a patient should be.

(Related: read an excerpt of Porochista Khakpour’s Sick here at Longreads.)

3. “Doctors Told Her She Was Just Fat. She Actually Had Cancer” (Maya Dusenbery, Cosmopolitan, April 17, 2018)

After experiencing coughing fits for three years, Rebecca Hiles visits the doctor, only to be told her condition is “weight-related.” Hiles is not the only one to be dismissed in this way; in this insightful and eye-opening essay, Dusenbery collects stories of women who have been fat-shamed by doctors rather than being treated with care, resulting too often in dangerous downward spirals in illness.

4. “The Reality of Women’s Pain” (Rachel Vorona Cote, The New Republic, March 7, 2018)

Rachel Vorona Cote situates Abby Norman’s Ask Me About My Uterus: A Quest to Make Doctors Believe in Women’s Pain, a book about Norman’s arduous experiences receiving treatment for endometriosis within a long history of “wild theories about female anatomy” such as the “wandering womb” theory of Ancient Greece, Freud’s dismissal of patients as hysterical, and others.

As Norman communicates so powerfully, a woman’s relationship to her pain is a snarled coil of memory and socialization.

(Related: read Abby Norman’s Women’s Troubles, from Harper’s.)

5. “On Telling Ugly Stories: Writing with a Chronic Illness” (Nafissa Thompson-Spires, The Paris Review April 9, 2018)

Nafissa Thompson-Spires not only chronicles the emergency room visit and appointments that led to her initial diagnosis of endometriosis, but also writes about what it means to be a woman with an invisible chronic illness, and her identity as a black woman within the realm of the medical world.

In Ain’t I a Woman: Black Women and Feminism and Talking Back: Thinking Feminist, Thinking Black, bell hooks problematizes the persistent myth of the strong black woman. This myth contributes to real-life consequences in medicine and elsewhere.

6. “Checkbox Colonization: The Erasure of Indigenous People in Chronic Illness” (Jen Deerinwater, Bitch Magazine, June 8, 2018)

When Jen Deerinwater visits the doctor, her identity as “a citizen of the Cherokee Nation of Oklahoma” is erased by problematic intake forms that only include the options of “American Indian” or “Native American,” and she is often asked “degrading and humiliating questions” by medical professionals. Deerinwater lists a litany of ways in which Native people are ignored and mistreated by the healthcare system, resulting in lack of access to resources and treatments, shortened lifespans, and a host of other harms.

(Related: read other essays from the 15-part “In Sickness” series from Bitch Magazine.)

7. “Health Care System Fails Many Transgender Americans” (Neda Ulaby, NPR, November 21, 2017)

As of November 2017, 31 percent of transgender Americans lacked regular access to healthcare, due in part to how difficult it is for transgender people to find jobs. Neda Ulaby notes that “insurance companies and many medical professionals still treat them as though their bodies don’t make any sense,” which causes anxiety for trans people when visiting physicians, something Planned Parenthood is trying to ameliorate through staff training.

(Related: read Making Primary Care Trans-Friendly by Keren Landman, from The Atlantic.)

8. “A Matter of Life & Death: Why Are Black Women in the U.S. More Likely to Die During or After Childbirth?” (Meaghan Winter, Essence, September 26, 2017)

When Fathiyyah “Tia” Doster was pregnant, she began to feel bloated late one night. Luckily, she visited the hospital, where she safely delivered her baby. A diagnosis of hemolysis, elevated liver enzymes, low platelet count (HELLP) syndrome left her hospitalized for more than three months, but alive. Other pregnant women are not so lucky. Meaghan Winter explores the historic backdrop of healthcare for black women, the current political climate which is threatening women’s access to insurance and clinics, and bias within hospitals, all of which have contributed to rising rates of maternal mortality.

The complex web of causes — which includes genetic predispositions, chronic stress, racial bias and structural barriers to health care — contributes to the racial disparity in maternal health.

In the end, Winter offers strategies for health providers, reformers, and patients and their families to implement necessary change.

Jacqueline Alnes is working on a memoir of running and illness.