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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.

September 17, 2018
Categories: Reading List
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Ten Translations of Care

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Illustration by Wenting Li

Mary Wang | Longreads | September 2018 | 23 minutes (5,814 words)

 

1. Care /ker/ [verb], 保护 bǎo hù, the process of protecting someone or something.

In January 2018, Guo Zhen, my grandmother, was diagnosed with late-stage lung cancer. A month later, I arrived home for the first Chinese New Year that I’d spend in China since I had moved away 20 years earlier. I came home with my armor ready — my suitcase was packed with a library including Emperor of All Maladies, Siddhartha Mukherjee’s canonical book on the illness; Susan Sontag’s Illness and Its Metaphors, so that my analytical mind could help carry the weight of my emotional one; and Joan Didion’s The Year of Magical Thinking, a manual for grief in the event of the worst-case scenario. I had rehearsed the serene facial expression I’d use when I’d see Guo Zhen in her hospital bed for the first time, and I had conscientiously visualized every IV drip and beeping machine to blunt any potential shock. Yet what I found in our family home was the rehearsal of a familiar routine: Her son, my uncle Fu Yuan, was still battling with his son to choose his homework over his iPad; Guo Zhen still sat on her children’s stool in the morning, washing clothes in a bucket of cold water, and grandfather, Pu Cheng, still bugged her to play their daily chess game, holding up a paper board fortified so many times over that the plastic tape covering it was far thicker than the board itself.

Guo Zhen didn’t know she had cancer, and my family had carefully devised a strategy to keep it that way. Doctors and nurses in the hospital had been instructed to never speak of her illness in her presence, and visitors to our home signed an invisible contract before entering, agreeing to act as if her recent hospitalization was due to a case of pneumonia. I never asked her to sit down when she’d get up after every few bites during lunch or dinner to restock the table with congee, buns, or pickles — I knew she did this out of habit rather than necessity. Fu Yuan and his wife never fought to take over her housework, though we worried about the strain of repetitive hunching on her weakening body. Any deviation from routine risked puncturing the facade of normalcy we all worked carefully to preserve, and, within a month, my family had become a theater troupe improvising their first performance, an intimate Truman Show designed to deceive its protagonist.

At 78, there was no point in performing surgery or chemotherapy on Guo Zhen anymore, and any new miracle drug that might land in the world would only arrive in China years after its introduction on the American market. Besides, the decidedly optimistic belief that cancer will soon become only a chronic illness rather than a fatal one is more of an American specialty — its arrogant nature evident when President Nixon declared a “War on Cancer.” The Chinese counterpart to that phrase illustrates a different approach. As one local newspaper put it, “One third of cancer patients die of fear, one third die of its treatment, and only one third die of the illness itself.”

Since there wasn’t much territory to be won in terms of Guo Zhen’s illness or its treatment, we shifted our efforts to shielding her from the first possibility. As soon as doctors saw the dark spots on Guo Zhen’s X-rays, Fu Yuan instructed them to follow our script. “Don’t let the lao ren” — the elderly — “know,” he said, emphasizing Guo Zhen’s status as a senior to make clear that she was no longer a caretaker but the one who was cared for.

“If a man die,” William Carlos Williams wrote, “it is because death / has first possessed his imagination.” Grandfather Pu Cheng, unaware of the American poet, has long touted his own version of this phrase. Boasting about how he’s never stepped foot in a hospital for himself, he’d say, “Nine out of ten people die from fear.” Even though Pu Cheng was also left in the dark about his wife’s disease — we didn’t trust him to keep a secret from his partner of 60 years — we abided by his logic that a doctor’s diagnosis could be a death sentence in itself. By shielding Guo Zhen from the weight of the doctor’s words, we took over the burden of her illness with our own shoulders.
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September 17, 2018
Categories: Editor's Pick, Essays & Criticism, Featured, Nonfiction, Story
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White Men On The Verge of a Nervous Breakdown

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Marchers at Portland, Oregon's Women's March, Jan. 20, 2018 (Dave Killen for The Oregonian / AP)

The rights and priorities of white men have always overshadowed those of people of color and women in the United States. They are, however, a ruling minority — white men comprise only a third of our national population.  at The Cut credits shifting demographics and destabilizing movements like #metoo with making white men itchy enough that they’re trying to minimize and invalidate their disruptors.  

White men are at the center, our normative citizen, despite being only around a third of the nation’s population. Their outsize power is measurable by the fact that they still — nearly 140 years after the passage of the 15th Amendment, not quite 100 years after the passage of the 19th Amendment, and more than 50 years after the passage of the Civil Rights and Voting Rights Acts — hold roughly two-thirds of elected offices in federal, state, and local legislatures. We have had 92 presidents and vice-presidents. One-hundred percent of them have been men, and more than 99 percent white men.

The suffocating power of our minority rule is evidenced by the fact that we’re always busy worrying about the humanity — the comfort and the dignity — of white men, at the same time discouraging disruptive challenge to their authority.

And yes, some of the upholders of minority power are themselves women — women working in service of a brutal white patriarch and the brutal white patriarchal party he leads. Similarly, a majority of white women voted for Trump, and always vote for his party, because they benefit from white supremacy even as they are subjugated by patriarchy. This same dynamic explains why higher percentages of men in every racial category voted for Trump and his party: They gain through the patriarchy even as they are oppressed by white supremacy. This is how minority rule persists.

To publicly rebuke a black woman’s support for protest and not the powerful white patriarch’s thinly veiled call to violence against her is to play on the very same impulses that Trump himself plays on: racist and sexist anxiety about noncompliant women and nonwhites, and the drive to punish them.

These people had nice dinners in restaurants interrupted. They did not have their children pulled from their arms, perhaps forever; they were not refused refuge based on their country of origin or their religion or the color of their skin; they were not denied due process; nor were they denied a full range of health-care options, forced to carry a baby against their will, separated from their families via the criminal justice system, or shot in the back by police for the mere act of being young and black.

One reason that the fury of women is regularly dismissed as theatrical and marginal and unserious is precisely because, on some level, the powerful must sense that it is the opposite of all of those things. That, in fact, it presents a very real threat.

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July 5, 2018
Categories: Editor's Pick, Featured, Nonfiction, Quotes, Unapologetic Women
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A Frustrating Year of Reporting on Black Maternal Health

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Danielle Jackson | Longreads | June 2018 |3370 words (14 minutes)

“It’s in fashion to talk about black women’s maternal care,” Bilen Berhanu, a Brooklyn-based full-spectrum birth doula told me recently. I’d asked her about the outpouring of news stories, from multiple national outlets, about infant and maternal mortality over the past twelve months.

The reporting has added flesh and aching detail to what I’ve come to think of as an embarrassing public health crisis in the United States. Among industrialized countries, our nation has the highest rate of infant deaths. We’ve had dramatic declines since 1960, but we have not kept pace with other nations we’d consider peers. New American moms face similar danger: The rate of maternal mortality in the U.S. has been rising since 2000 while falling for most other nations in our subset.

Deep, persistent inequality — access to safe neighborhoods and hospitals, functioning schools, healthy food — plays a part. But across family income levels and educational attainment, the infant mortality rate for black babies is more than twice than it is for whites, according to data from 2007-2013. Black mothers are also more imperiled than white ones — they are three to four times more likely to die from pregnancy-related causes leading up to or within a year after giving birth. In New York City, black mothers are 12 times more likely to die than their white counterparts. Read more…

June 13, 2018
Categories: Current Events, Story
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Diary of a Do-Gooder

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Illustration by Nusha Ashjaee

Sara Eckel | Longreads | January 2018 | 19 minutes (4,774 words)

In the fall of 2016, I stood on the concrete steps of a mustard-colored ranch house off the New York State Thruway in Ulster County, a broken red umbrella hooked below my shoulder. The mustached man at the door — 50ish, in a t-shirt and khakis — had the stern, dry look of a high-school science teacher.

“Hi, Thomas?”

He nodded.

“Hi, Thomas, my name is Sara, and I’m a neighborhood volunteer for Zephyr Teachout for Congress.”

Thomas didn’t tell me to go away, didn’t slam the door or scold me for interrupting his day. He stoically endured my spiel about why I was spending my Sunday afternoon doing this — because Zephyr has been fighting corruption for her entire career, and I believe she’ll go to Washington and represent the people of New York’s 19th District, rather than corporations and billionaires.

“Okay, thank you,” he said, closing the door.

“Would you like some literature?” I asked, proffering some rain-dotted pamphlets.

“No, you people have sent us plenty.”

You people.

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January 19, 2018
Categories: Editor's Pick, Essays & Criticism, Featured, Nonfiction, Story
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Fast or Slow: What’s the Best Way to Die?

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Silhouette of death with scythe.Lighting info: one flash with cells behind model and rain from sprayer between the flash and the model

The grim reaper is fickle, inconsistent, and unpredictable.

To wit: This past weekend a 55-year-old childhood friend of my husband’s died suddenly and unexpectedly from a massive coronary, leaving everyone around him stunned.

Ironically, at the moment my husband looked up from Facebook to express his shock, I was in the middle of reading “My Father’s Body at Rest and in Motion,” Siddhartha Mukherjee’s scientific personal essay in the New Yorker about his octogenarian father’s excruciatingly slow demise, after suffering a few falls.

Mukherjee, a physician, considers the body’s proclivity toward homeostasis, which kept his elderly father’s failing body alive for months — much longer than seemed to make sense.

“Old age is a massacre,” Philip Roth wrote. For my father, though, it was more a maceration—a steady softening of fibrous resistance. He was not so much felled by death as downsized by it. The blood electrolytes that had seemed momentarily steady in the I.C.U. never really stabilized. In the geriatric ward of the new hospital, they tetherballed around their normal values, approaching and overshooting their limits cyclically. He was back to swirling his head vacantly most of the time. And soon all his physiological systems entered into cascading failure, coming undone in such rapid succession that you could imagine them pinging as they broke, like so many rubber bands. Ping: renal failure. Ping: severe arrhythmia. Ping: pneumonia and respiratory failure. Urinary-tract infection, sepsis, heart failure. Ping, ping, ping.

Those feats of resilience surrendered to the fact of fragility. And, as the weeks bore on, an essential truth that I sought not to acknowledge became evident: the more I saw my father at the hospital, the worse I felt. Was he feeling any of this? Two months had elapsed since his admission to the geriatric ward.

I read Mukherjee’s piece on the heels of revisiting “A Life Worth Ending,” a similar 2012 New York Magazine piece by Michael Wolff (yes, that Michael Wolff) which I’d been reminded of on Twitter, about his mother’s “dwindling” in a miserable, expensive, endless-seeming purgatory in the year before her death.

(In my early 50s, about the same age both my grandmothers were when they died, I’m mildly fixated on death.)

Wolff — who includes the same Philip Roth quote in his piece — writes of his frustration witnessing his mother’s last years, when she seemed caught precariously and unenviably between life and death; not well enough to live on her own without tremendous intervention from her family and doctors, but not sick enough to quickly die. He makes a convincing case against the medical establishment’s endeavors to keep the dying alive long past such time as they are able to thrive on their own, leading to painful, slow deaths that deplete families and taxpayers.

Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.

This is not anomalous; this is the norm.

The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

A few nights after their friend died, my husband and his brother attended the funeral. Afterward, the three of us got into a discussion about how strange it is that for the most part, none of us have any idea how or when we’ll exit this world, and no control over the matter. We debated whether those faster “traditional exits” Wolff identifies are better or worse than slower routes, which afford loved ones time to prepare and say goodbye.

We ended the evening as mystified as we’d been begun it.

 

January 12, 2018
Categories: Blog Post, Nonfiction, Quotes
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Longreads Best of 2017: All of Our No. 1 Story Picks

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All through December, we’ll be featuring Longreads’ Best of 2017. Here’s a list of every story that was chosen as No. 1 in our weekly Top 5 email.

If you like these, you can sign up to receive our weekly email every Friday. Read more…

December 11, 2017
Categories: Commentary, Nonfiction, Reading List, Top 5
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“No Fatties”: When Health Care Hurts

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Illustration by Hannah Perry

Carey Purcell  |  Longreads  |  October 2017  | 4280 words (16 minutes)

Kasey Smith began gaining weight as a teenager. The numbers on the scale started increasing overnight, and no matter how few calories she consumed, they continued to go up. “It will even out,” she thought, crediting the change to puberty and hormones. But it didn’t, and her hair and skin began changing as well. “Something was definitely wrong.”

Each medical appointment, and there were many, concluded with doctors telling her to go on a diet. Smith (not her real name) remembers telling the endocrinologist about her frustrations with burning off the 900 calories she consumed each day and still gaining weight. “He looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’ I was stunned silent, and I went into the bathroom and broke down. ‘He doesn’t believe me. He thinks I’m just fucking with him.’”

As Smith’s weight went up, her food intake went down. Her mother signed her up for Nutrisystem, and her diet hung on the fridge for everyone in her family to see. Shame and humiliation narrowed her life down to three questions: what to eat, what not to eat, and how to burn more calories. She began to form dangerous habits, sometimes eating little more than lettuce.

Smith ultimately received a diagnosis of polycystic ovary syndrome, a hormonal disorder that can lead to excess male hormones, irregular menstrual cycles, and weight gain. She was prescribed Metformin and quickly began to lose weight, but the damage had been done. The 18-year-old developed anorexia, leaving for college at 130 pounds and coming back four months later and 30 pounds lighter, her hair falling out in clumps.

No one thought anything was wrong.

“I would go to the doctor, and there were no red flags. It was ‘You look fantastic!’ Not ‘This is alarming.’” Smith continued starving herself for another year until she ended up in the hospital, undergoing a colectomy to remove a foot and a half of her intestines, which had twisted as a result of her severe calorie restriction.

One year after the surgery, her worst nightmare returned: She was gaining weight. Celiac disease was the cause this time, but it wasn’t diagnosed until after Smith was in the habit of purging the little food she ate every day. She would regularly run in the park and pass out afterward. “I would starve all day, then I’d eat something at night, then I would purge it. In my head, I’m thinking, ‘I’m literally not consuming anything. The weight has to fall off.’”

She realized she needed professional help, and Smith found a therapist who specialized in eating disorders and began treatment at The Renfrew Center, a residential facility in Pennsylvania. She continues to struggle with discussing her weight at medical appointments. After she told her endocrinologist about her treatment at Renfrew, his reply was “I see you need to lose some weight.”

* * *

According to the National Association to Advance Fat Acceptance, one out of three doctors responds to obesity negatively and associates it with poor hygiene, hostility, dishonesty, and noncompliance, viewing fat patients as “lazy, lacking in self-control, non-compliant, unintelligent, weak-willed and dishonest.”

“Doctors may think they are doing their jobs by focusing on patients’ weights,” said Dr. Rebecca Puhl, deputy director of the Rudd Center for Food Policy and Obesity. But the effects of weight discrimination, both physical and mental, can be harmful to patients. “I do see this in health providers just as much as the general population, which is that maybe stigma isn’t such a bad thing. Maybe it will motivate people to lose weight. Maybe it will provide incentives for weight loss. But that is not what we see in research. We see the opposite — that in fact, stigmatizing people about their weight actually reinforces behaviors in health that increase body weight and obesity.”

The doctor looked at me and said, ‘Maybe you can cut back your McDonald’s to twice a week.’

As weight discrimination has increased in recent years — roughly 40 percent of adults report having experienced some form of weight stigma — so have obesity rates. A positive correlation between experiencing weight bias and developing eating disorders has been documented, and two studies have reported that overweight children are more likely to binge after being teased about their weight. Nor do these habits change as we age. In a 2006 study of more than 2,000 overweight and obese women who were part of a weight loss support group, 79 percent said they turned to food after experiencing weight stigma. Another common response: refusing to diet.

Johanna Tan encountered that stigma when she gained 80 pounds in three months after beginning the hormonal birth control Depo-Provera. Her doctor suggested weight loss, and she chose a weight loss clinic. In the weeks after undergoing her doctor-mediated diet of 500 to 800 calories a day, Tan began experiencing episodes of chest pain so severe she made more than one trip to the emergency room. Her general practitioner blamed her symptoms on her large breasts. “Never mind that my boobs have always been this big, and this was a new symptom,” Tan said, laughing wryly as she explained she had been performing special exercises and getting massage treatments to help ease the symptoms. But it wasn’t her breasts that were causing the pain, it was her gallbladder. Gallstones had blocked her common bile duct, and if left untreated it could cause acute liver failure. The cause of the gallstones? Rapid weight loss. Neither Tan’s weight gain nor her loss had been correctly assessed by her doctors. (Depo-Provera lists weight gain as a common side effect. When Tan voiced concerns to one doctor, she was told, “Everyone gets more hungry. You just need to not eat more.”)

The assumption that any health issues a fat person experiences can be chalked up to weight has not gone unnoticed by the fat community. Marilyn Wann was motivated to pursue fat activism after what she describes as her Really Bad Day, when a man she was dating told her he was embarrassed to introduce her to his friends because of her weight, and she was denied health insurance because Blue Shield of California deemed her morbidly obese.

“This double whammy of social and institutional exclusion based on my weight woke me up,” she said. “Until then, I had hoped to avoid the impact of anti-fat attitudes by avoiding the whole topic. But hiding and silence and avoidance didn’t keep the yuck from finding me. So I recognized that I had to come out as a fat person. The next day, I went to a copy store and made up business cards for my new print zine, which I decided to call FAT!SO? — ‘For People Who Don’t Apologize for Their Size!’ Immediately, my life became less stressful. Of course, I still encounter anti-fat attitudes and weight-based exclusions, but I have drawn a line between me and the hatefulness. It makes a huge difference.”

Wann still experiences bias, especially at the doctor. “I know before I enter the door that the whole system prioritizes its prejudice over my well-being,” she said. “The prejudice is what’s necessary to the institution as it stands. The medical establishment, the insurance agencies, public health agencies that are government-based have always advanced their agenda on the back of fat people. … The institutions of our supposed health systems — in the government agencies, in the insurance companies, in all of the medical practices — are saturated or have deeply ingrained anti-fat bigotry.”

Establishing the balance of information and compassion while discussing a patient’s weight is constantly on Rebecca Zuckerman’s mind. “It puts medical professionals in a weird catch-22,” said Zuckerman, a fourth-year medical student at the Pritzker School of Medicine at the University of Chicago, who understands the motivation of fat activists but whose education includes the negative medical impacts of obesity. “It’s something I’ve struggled with personally. You can only explain it and tell people their options. You can ask if it’s OK to talk about weight loss or give more information. If they say, ‘No, I don’t want to hear it,’ you have to respect that.”

Still, the intense schedule of medical professionals, who are often allotted only 15 to 20 minutes per patient, often results in less-than-ideal communication. It’s easier to reach for the quickest conclusion: telling the patient to lose weight. Says Zuckerman, “A lot of doctors and nurses experience burnout, and they start losing empathy and don’t view the patients as people anymore. Your hands are tied to stay within those 20 minutes. Everyone’s trying to make more money, and the doctors are a cog in the wheel.”

That’s along with pervasive stereotyping about fat people in the medical community. In a study of 318 family physicians, two-thirds reported that their obese patients lacked self-control, and 39 percent stated that their obese patients were lazy. Even health care professionals specializing in nutrition thought poorly of their obese patients: “Attitudes toward obesity and the obese among professionals,” a study in the Journal of the American Dietetic Association, reports that 87 percent of health care professionals specializing in nutrition believe that obese persons are indulgent, 74 percent believe that they have family problems, and 32 percent believe that they lack willpower. In 2013, the American Medical Association labeled obesity a disease.

The misdiagnoses that occur lead directly to poor health outcomes. Johanna Tan ultimately spent three years in pain, leading to four weeks of hospitalization, a series of invasive surgical procedures, and lengthy rehab — procedures that wouldn’t have been necessary had the gallstones been caught earlier. While she was enduring severe pain following her first surgery and struggling to complete her postsurgical rehab, the hospital staff accused her of being lazy. “I spent two weeks in hospital post-surgery,” she said, “copping abuse for being lazy and not participating in my own rehab, before they realized they fucked up.” Tan said the nurses were condescending, saying, “I know it hurts. It’s major surgery. You still have to get up.” The pain didn’t ease until her doctors realized they had missed some gallstones and had to perform a second surgery. Tan wasn’t able to walk more than 10 feet at a time for the first month following her surgeries. It took six months for her to be able to walk further than a block.

* * *

Fat patients also often find themselves facing off with doctors who refuse to write prescriptions or referrals until patients lose an arbitrary amount of weight, a common scenario for those seeking joint replacement surgery. Despite being in “crazy amounts of pain,” Melinda Belles-Preston was required to lose 30 pounds before receiving an operation on her hips. Losing between one and two pounds a week, a healthy pace according to the Centers for Disease Control, would delay her surgery by several months. Heavier patients see longer lags. A required loss of 50 to 100 pounds can postpone a procedure for months or even years unless the patient undergoes weight loss surgery. Without surgery, the time spent in pain is prolonged, opening the door to painkiller dependence. It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.

“Going in nutrient-deprived and starved is probably not a good way to send someone into heart surgery or major any surgery,” Wann said; her tone made it clear she was stating what she thought should be obvious. “Someone who’s been losing weight may have worse outcomes than someone who’s stayed the same weight. … It’s amazing how someone can just look at you and decide how a random number of pounds can shift you from someone who doesn’t deserve care to someone who does.”

Pain management was barely discussed when Virgie Tovar, activist and author of Hot & Heavy: Fierce Fat Girls on Life, Love & Fashion, went to the doctor after being injured on an amusement park ride. Suffering what she described as “debilitating back spasms” that made movement “electrifyingly painful,” she was told she had to lose weight before anything could be done for her. “It was like this dogged commitment to not helping me until I was at a different weight,” she recalled. “Let’s say I lose weight at what is considered a normal pace that doesn’t endanger a person’s life. For me to get to the weight you’re talking about is like 10 years. So I just get to be in pain until I’m at that weight. And if I’m still in pain after a decade of weight loss, then you’ll think about taking care of this?”

Ideally, preventive care helps patients avoid catastrophic health problems, but it’s not always accessible to fat patients, whether because of issues with doctors, issues with technology, or both. Fat patients have been refused medical screenings, such as Pap smears, mammograms, and colonoscopies, that are considered routine and vital for thin patients. The American Cancer Society advises women to get mammograms yearly beginning at age 45 and colonoscopies every 10 years beginning at age 50, but fat people often struggle to find facilities that will perform the screenings and are told they cannot fit in the machines.

A required loss of 50 to 100 pounds can postpone a procedure for months or even years… It took Belles-Preston roughly six months to lose the weight, and she was in pain the entire time.

The importance of an MRI comes from its ability to provide higher-quality images. But the machines that provide those images are small, and other options, like CAT scans or ultrasound, don’t provide a comparable alternative. “All those scans need to penetrate the body to create an image. If a body is larger and has more fat tissue to penetrate, the image quality is poorer and blurrier, and it’s harder to make out structures,” Zuckerman explained. “It’s harder for skilled radiologists to diagnose things in patients who are larger for that reason. … The fact is, MRI machines are tiny. Some people literally cannot fit in them. So we do something else like an ultrasound or CT that is not quite as good. It’s better than nothing, but it doesn’t give us the image quality that an MRI does. You run the risk of missing something because the picture that you’re getting is not clear.”

The need for hospital equipment that can accommodate fat people has grown, and imaging devices are now available. This equipment is not available everywhere, however, and sometimes patients are referred to their local zoos. When Wann called the San Francisco Zoo’s medical department to ask about accessing its technology, the person on the phone sighed and said, “I wish people would stop saying that,” referring to requests to use the department’s CT and MRI scanners. While vet schools and zoos have larger-capacity devices, they can’t allow human subjects, and scanning humans in machines intended for animal subjects is banned by formal policies in most facilities. “That’s really beyond their certification,” explained Wann. They’re not licensed as an institution to practice medicine on people. Their entire institutional certification is being put on the line because our human medical system refuses to accommodate people above a certain size. It draws an arbitrary line and says, ‘Go beyond this line, and they’re monsters.’”

Without being properly screened, patients can’t be diagnosed. A 2008 review of previously published studies, 32 in total, reported that white, female, obese patients were less likely to be screened for breast and cervical cancer. A study from 2006 reported that only 68 percent of women with a BMI of greater than 55 were given Pap tests, while 86 percent of other women were tested.

In some cases, this is a result of fat patients opting out of health care entirely, even if they otherwise have the ability to access health care facilities and are insured: According to the International Journal of Obesity, 19 percent of participants reported that if they felt stigmatized about their weight by their doctor, they would avoid future medical appointments, and 21 percent said they would seek a new doctor.

“Fat people don’t go to the doctor often. They tend to avoid it,” writer and activist Kitty Stryker said. “A lot of fat people are ashamed of being naked. They don’t want to be touched. When I say I have a lower-back problem, I know they’re going to say, ‘Lose some weight, and that will go away.’ So what’s the point? Why bother continuing to try to get to the root of my health problems when I know the only thing they will ever tell me is ‘Lose weight’?”

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Patients often face added risk beyond concerns of being dismissed or the necessary treatment being denied: the possibility of weight loss treatments and procedures being strenuously suggested at inopportune or irrelevant moments. While the American Academy of Family Physicians recommends screening for obesity along with monthly sessions of counseling and behavioral interventions, the timing of these suggestions is crucial to the impact of motivational interviewing — and execution is often poor. Tan was mid-Pap smear when her doctor asked if she wanted a Weight Watchers pamphlet.

“The speculum’s already in and open. And she says, ‘I can tell you’re getting upset. Do you want me to continue?’” Tan recalled in disbelief. “I said yes because I didn’t want to have to make another appointment for my Pap smear. I was so mad, I was crying at this point. I couldn’t move. I couldn’t yell. She said, ‘I can tell I’ve made you upset, but weight is a serious issue.’”

Although familiar with the prejudice that came with her weight, Belles-Preston was still shocked when her general practitioner recommended weight loss surgery — while she was pregnant. “I walked out of the room. It was so incredibly offensive to me. I’m coming to you for medical advice about my pregnancy, and you’re talking to me about weight loss surgery, which is the furthest thing from my mind.”

“I have tons of resources and attitudes for confronting this kind of stuff, and it can still kill me,” Wann said as I marveled at her calm approach to discussing prejudice so severe it can result in death. “I understand not going [to the doctor]. I think it’s self-protective to some extent.… Every time I go to any kind of medical appointment I anticipate facing weight bias. I anticipate being denied the sort of services thin people would receive with no problem or being targeted for weight-based treatments that I don’t want and could harm me. I’m not interested in stomach amputation or stomach squeezing. I don’t think those are therapeutic practices in any sense. Every time I go see a doctor I’m aware they may casually say the only thing they want me to do is have my stomach cut off.”

* * *

The effects of that bias were traumatizing and long-lasting for Tan. Triggered by her uncomfortable experiences in hospital environments, Tan’s first job as an audiologist after graduate school provoked frequent panic attacks because of its location at a hospital. “I used to have to go to work early so that I could tamp down the panic associated with being in a hospital at all,” she said. “This fear of hospitals hasn’t quite gone away. Most recently, a few months ago, we had to spend a few days in ICU as my partner’s dad passed, and just being back in ICU rattled me so badly it was a month before I could stop popping several Valium a day.”

It was the adversarial relationship she had developed with doctors and nurses that contributed to Tan’s panic. And she’s not alone. For many, thin means healthy and fat means unhealthy. So small and slender equates with good health and is encouraged by medical providers, often resulting in strained relationships with their patients.

The idea that the lower the weight, the healthier the person, escalated into life-threatening conditions for Smith, who was frequently complimented on how healthy she looked while she was starving herself. “When you’re restricting [calories] you can brag about it,” she said, recalling her preparation for the colectomy. “[Doctors] asked, ‘Are you eating well and exercising?’ I said, ‘I’m very healthy. I exercise all the time. I only eat vegetables.’ It’s a funny dichotomy. Just because the scale is low does not mean that you’re healthy. A lot of doctors forget to be careful of that.”

But as the number on the scale climbs, the less flattering characteristics — greed, lack of control, messiness, lack of self-care, laziness, automatic unhealthiness — are associated with fat people, only to be furthered by the media’s portrayal of fat characters, who are typically the butt of jokes or seen as slovenly and undesirable. Women are often the punch lines, much more than men. BMI standards also are more harsh for women than for men, which is apparent in the statistics regarding weight loss surgery: Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women. In a 2014 study from Kansas State University, 72.8 percent to 94 percent of overweight and obese men were satisfied with their health as compared with 56.7 percent to 85 percent of overweight and obese women. There’s a reason all the stories and sources here are about and told by women.

“The truth is that there are reasons why fit people live longer, better lives,” Tovar said. “It’s because the entire culture is constructed to benefit them.” Weight discrimination is associated with an increase in mortality risk of nearly 60 percent for both women and men.

Fat activists are working to provide recourse at the community level; patients share the names of fat-friendly doctors or establishments, and Wann uses her social networks to help people get referrals for doctors and other medical providers. She also assists people with planning responses to doctors and providers who inflict weight bias. Fat activist Stef Maruch maintains a list of doctors who do not inflict bias or are fat positive, and Wann encourages people to update it whenever they can. NAAFA also publishes brochures and tool kits to assist fat people in navigating bias and fighting anti-fat legislation. A monthly newsletter updates recipients with the latest research and provides referrals to practical tools like products made for people of size. After Hurricane Harvey devastated Texas, NAAFA released a special-edition newsletter and sent plus-size clothing and supplies.

Obesity rates in America are split fifty-fifty between genders, but 80 percent of bariatric surgeries are performed on women.

The organization has also updated the brochure it gives health care providers treating fat patients. It was last updated in 2011, and per the recommendation of one of NAAFA’s advisers, its language is being revised to be much more aggressive when discussing weight bias with medical professionals. “Up until this point we’ve been trying to inform and be a little bit gentle,” explained Peggy Howell, NAAFA’s vice chairman and public relations director, citing the research scientists, Ph.D.s, and professors in medicine, law, nutrition, social work and more who serve on NAAFA’s advisory board. “The advisers came back and said, ‘I think we need to take a different approach. I think we need to be more assertive about this. There are lots of studies that support that this bias does more harm than good to the patients.’” The nonprofit’s 2011 brochure states, “NAAFA is working to help ensure that health care providers provide the best possible care by keeping in mind the special needs of their fat patients.” The new brochure reads, “We currently live in an environment that stigmatizes anyone who does not meet the aesthetic or medically defined categories of an ‘attractive’ or ‘healthy’ weight… [it] creates and sustains fat phobia and oppression, which includes weight bias, prejudice, stigma, discrimination, bullying, violence, and cultural imperialism. … Sometimes the internalized biases of health care providers directly contribute to further stigmatization of fat people.”

There is some movement on the medical end as well, driven by health care providers seeking training and resources. The Rudd Center has developed educational videos, which have been tested and found to reduce weight bias. Viewing the two 17-minute films — “Weight Prejudice: Myths and Facts” and “Weight Bias in Health Care” — resulted in improvement in attitudes toward obese people. The Rudd Center has also created a media repository of 400-plus photos and more than 80 B-roll videos that portray children and adults with obesity in non-stigmatizing ways, intended as a resource of respectful, rather than stereotypical, images for the media as well as scientists and health professionals to use when making educational presentations.

“We’ve created online courses and all different kinds of resources to use to try to increase awareness about this issue and educate providers that this is more than a social justice issue,” Puhl said. “This is a full public health issue. The stigma is making their patients’ health worse.”

For many fat people, the response is too little, too late. “I would rather doctors have signs on their door saying, ‘I don’t treat fat people,’” Wann said. “It would save everyone time and money if they had a sign on their door that said, ‘No fatties.’ At least they would be honest and own their bias.”

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Carey Purcell is a New-York based writer who covers culture, politics and current events from a feminist perspective. She has been published in The New York Times, Vanity Fair, Politico and other publications. She has been a featured guest on AM Joy and Good Morning America, and her writing can be read at CareyPurcell.com.

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Editor: Michelle Weber
Illustrator: Hannah Perry
Fact checker: Matt Giles
Copy-editor: Sylvia Tan

October 26, 2017
Categories: Arts & Culture, Story
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The Secret Women’s Organization Providing for Black Communities

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At a moment when there’s so much distressing news about bad men, it’s a relief to read an article about some inspiring women.

At Lenny Letter, novelist Kaitlyn Greenidge writes about her weekend in Chesapeake, Virginia for the 150th anniversary of the United Order of Tents, a somewhat secret society of black women established just after the end of the Civil War, which has long provided financial and other kinds of support to black communities.

The organization was founded by two former slaves, Annetta M. Lane and Harriet R. Taylor. Lane had been a nurse on the plantation where she was enslaved, and over the years, that has influenced the group’s makeup and mission.

Tents members are from all social classes — Lodis Gloston was a school principal before she retired; others work in government or real estate, and some are working class. In the past, Tents members were often nurses, another link to the organization’s founder, Annetta Lane. And even at this conference, there is a small but vocal group of health-care workers.

This connection to health care is central to the Tents’ mission.

But health care is merely one focus. For generations, those women have worked together to provide so much more.

Most astonishing about the Tents is the fact that about a generation out of slavery, in 1894, they established a rest home for the elderly that they ran continuously, with no outside financial help and with no bankruptcy, for over 100 years, until 2002. In addition, at a certain point in the mid-century, the Tents served as a mortgage house for black families and churches who would not have been able to apply for loans from white banks. The Tents, therefore, literally helped build the institutions and homes of their communities.

Read the story

October 11, 2017
Categories: Editor's Pick, Nonfiction, Quotes, Unapologetic Women
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When You’re Broken by Breaking News

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Two mourners sit among crosses for those killed during the mass shooting in Las Vegas on Sunday. (AP Photo/Gregory Bull)

I managed to avoid most news about the mass shooting that occurred in Las Vegas this week, but it has been at the front of my mind. There were breaking news updates almost every hour, every day, but I didn’t click. I don’t know and still don’t want to know the gunman’s name. (I won’t use it here unless my editor tells me I have to.)

I was frustrated by the the breaking news updates, which was strange because I used to love being a breaking news reporter. I know the rush of unearthing a piece of information no one else has, of typing as fast as you can to get it out — the pride of being first. But something about this news cycle has changed that for me. I don’t care that the shooter was a gambler, or a loner, that he was cruel to his girlfriend in his local Starbucks, or otherwise unremarkable as he purchased multiple firearms. I don’t see what value that information has for the public.

Even as I type this, I know I’m wrong. Horrible, shocking events like mass shootings scare us, and information soothes us. On Monday, I asked an editor at a national news site, “Why did he do it?” He responded, “We’ll never know.” There was enough known about the shooter on day one to know he was as incomprehensible as the violence he perpetrated. That’s when I stopped paying attention. I know these little details, these constant updates, are attempts to create order out of chaos. I also know that effort is futile, and that futility frustrates me. The barrage of updates serves only to keep the horror in the national discourse. Read more…

October 6, 2017
Categories: Blog Post, Current Events, Nonfiction
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