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Jacqueline Alnes

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.

Going the Distance: A Reading List on Running

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As the sun washes the sky pastel, my feet clip in an even rhythm down the street and my breath settles into a ragged cadence. Swallows dart out from beneath a bridge, swooping through the new morning. When my Garmin lights, notifying me of a mile, I press forward. As the time stretches on, the sear in my hamstrings heightens and my lungs seek air. Hunting down the same elusive times I do nearly every morning, I run until I hit the six-mile mark where I ease up, allowing my legs to rest.

When I return from my runs, I record the distance and splits from each individual mile. I have been doing so for 13 years. When I line my records up on the floor, a profile of my former self takes shape. When I was merely 13, for example, I recorded that I started running at 7:11 AM, and ran eight miles in 59:21, averaging a pace of 7:25. My records sometimes list complaints: “Legs felt like bricks,” “legs hurt,” “windy,” or “toe bled a lot,” and still the mileage remains consistent with my training plan, the splits even.

There is a theme in my journals — and in my daily pursuit of distance — of the identity I’ve found in running, one that thrives on equal parts pleasure and pain. Running requires diligence that often borders on obsession, and, in chasing faster times and longer distances, I perpetually push my body to the brink of what is possible, until I teeter on the precipice of harm.

I used to find community in my high school team, and, for a short time, as a Division I athlete, but now alone, I find solace in several exceptional essays that open conversations about the limits of the body, of developing an identity through running, and, mostly, why any of us run in the first place.

1. “Running Towards My Father” (Devin Kelly, LitHub, June 2017)

Devin Kelly opens his essay with a description of his father, who is out for his daily three-mile run.

When he runs, my father’s breathing hustles to a rhythmic grunt punctuated by each footfall, accompanied by the swish of his nylon jacket. I have never seen my father bend or stretch. Before he runs, he takes off the clothes he does not need and begins, simply, as if a bird did not have to flap a feather before flying.

Kelly deftly weaves together his father’s running habit with his own pursuit of long distances, exploring failure, connections between running and writing, our identity as “creatures of longing,” and accepting pain, describing the sensation of “knowing how to dance along the thin line that is where your mind meets your body, about listening and being generous to yourself, about adjusting and re-adjusting, about, like so much else, trust.”

2. “How Running Ruined my Relationship, Killed My Faith…and Saved My Life” (Allison Stockman, Narratively, April 2018)

Allison Stockman, at 15, meets her first boyfriend who, while running, “had transformed from a skinny, seemingly weak, invisible kid to a lithe, powerful athlete who ran with the joy and abandon of Pheidippides and the irresistible style and charisma of Prefontaine.” So begins their romance, one complicated by her Mormon faith.

I had to explain that, as a true believer and follower of the faith, I was 100 percent committed to: no drinking, no smoking, no coffee, no tea, church for three hours every Sunday, and, of course, no premarital sex.

Throughout this essay, one that opens with a doctor prescribing Prozac and a 20-minute daily run in an in-patient psych ward, Stockman makes clear the ways that religion, running, and identity are linked in complicated — and often heartbreaking — ways. Running becomes both a lifeline and a metaphor, a way of making sense of an arduous personal transformation.

I knew I had to find some way to will myself back out there, even if there wasn’t a heaven anymore, no finish line to cross, no reward to be won from all that self-denial and sacrifice to live a “good” life.

3. “This Man Expects to Run a 2:50 in the Boston Marathon on Monday” (Lindsay Crouse, The New York Times, April 12, 2018)

Tim Don, at 40, had spent the majority of his life pursuing excellence as a competitive athlete, which not only gave him sponsorships and a career, but also much of his identity. When he was hit by a car during a pre-race bike ride, he suffered a hangman’s fracture, breaking his C2 vertebrae. Immobile and in pain, he made it clear that “a return to competition was his only option.”

In this harrowing story, Lindsay Crouse chronicles Don’s will to not only run the Boston Marathon, but run it in under 2:50. In order to reach the starting line, Don’s doctors equip him with a halo device, one in which titanium pins are screwed directly into the skull. Don’s story is one that raises questions about how far a person can — and should — go to pursue a sport:

Is his drive to compete again — the same drive that enabled him to record the world’s fastest time in one of the world’s most grueling races — fueling an incredible comeback? Or is he risking his health in pursuit of athletic feats that may no longer be attainable?

4. Amelia Boone is Stronger Than Ever (as told to Marissa Stephenson, Runner’s World, June 19, 2018)

Amelia Boone, who won the “World’s Toughest Mudder — a 24-hour nonstop obstacle course race – in 2012, 2014, and 2015,” was known as the “Queen of Pain” in endurance running for pushing the limits of bodily discomfort, course difficulty, and distance. There seemed to be no end to what Boone could accomplish with what she describes as a vicious internal pressure to never let herself fail:

I felt so much external pressure to keep winning. You have to keep winning, Amelia. You have to keep winning. What happens when you don’t win anymore? I felt like I had to put on this persona: Amelia’s a badass. Amelia will power through. This was an image I lived in for years, and it never felt comfortable to me.

After suffering a femur fracture, Boone attempts to return to competition by cross-training with unmatched intensity. But instead of finding herself back on the starting line, she ends up with a stress fracture in the base of her spine, and is finally forced to reconcile the disparity between the voice in her head telling her to chase perfection and the limits of her body. In this candid, moving essay, she addresses the importance of dismantling her own veneer of perfection to find true, lasting strength.

5. A Marathon, a Goal Time, the Sublime, and a Wolf (Jeanne Mack, Medium, November 2017)

Jeanne Mack, in an essay chronicling her training for the New York City Marathon, articulates the way in which long distance running asks us to press against the borders of everything we believe possible.

In literature, the concept of the sublime is something equally beautiful and terrifying; it is awe-filling. It’s something so great, infinite, or obscure that it’s inconceivable. This fall, that, for me, described the marathon distance. It towered somewhere in the sky, above anything else I’d tried to accomplish before.

Mack, who trains mostly in solitude, explores the tension between the recommended splits she hits during training and the inherent knowledge of her own potential. In isolation, she proves her strength time and time again to herself, communing with her body and the world around her during runs. Always, even in light of too-quick splits or a wayward GPS, she finds a way to surge toward her goals, what she terms “the edge of the sublime.”

6. The Immortal Horizon (Leslie Jamison, The Believer, May 2011)

Set at the Barkley Marathons, a race notorious for its difficult terrain, length, and mysterious entry procedures, Leslie Jamison illuminates how myths and stories are created while asking, why do we run? Jamison explores obsession, redemption, control, willpower, and pain, circling the idea of long distance running as if she was a hawk, wheeling closer and closer to the heart of the sport as this eleven-part essay progresses.

The persistence of “why” is the point: the elusive horizon of an unanswerable question, the conceptual equivalent of an un-runnable race.

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