A friend reached out from overseas, wanting to talk. “I tried typing it up, but it didn’t make sense.” When we talk, she is measured and reeling, dizzy from a visit with a new doctor.
Prior to this recent visit, she saw the same trusted doctor for decades, through her young adult life, through childbirth, through raising a now-teenage daughter. When she saw that doctor about a sudden change in her body, an inexplicable gain of 50 pounds, with no substantive changes to her regular diet, the doctor gestured toward a faded BMI chart and a diagram of a plate of food neatly divided into macronutrients. The doctor offered to prescribe Weight Watchers or Slimming World. “Calories in, calories out,” the doctor told her plainly. “Eat less. Move more.”
It was all so tidy, linear in a way that her body had never been. This is arithmetic; her body is algebra.
She checked with her husband, friends, family. Does she eat too much? Does she move too little? Each one reflected, then offered a reasoned and measured “no,” saying her habits mirrored their own.
So, for the first time, she saw a specialist. Within one visit, he solved the riddle of her body: an endocrine disorder that she has likely had for decades, causing her to gain weight at the drop of a hat. He said its onset likely took place in childhood. Despite a lifetime of regular doctor visits, in the space of moments, she suddenly has a diagnosis that makes sense of a lifetime in unruly skin.
“Is this an epidemic? How widespread is this kind of misdiagnosis?”
“He said the symptoms were classic,” she told me on the phone. Her body bears distinctive shapes and markings reserved only for those with this particular diagnosis. The specialist told her this condition rendered it nearly impossible for her to lose weight in the absence of medication and further treatment—the opposite of the Sisyphean task she’d taken on for so many years.
Her primary care doctor’s advice was a simple photograph. The specialist’s was its complex negative, a perfect opposite, bright where the other was dark, illuminated where the other was shadowed.
She struggled to comprehend what the diagnosis meant for her, the different paths she could’ve taken had she known, had she been treated. Later, she described this moment as a slow-motion punch. Even an ocean away, I felt it too.
She wondered if she’s alone. She is concerned about the millions of other timelines out there, woven into the fabric of fat people’s medical experiences. Just how big a problem is this? “Is this an epidemic? How widespread is this kind of misdiagnosis?” she wondered aloud.
I told her I didn’t know, but I’d ask.
“Have you ever been misdiagnosed by a doctor due to your size? What were the repercussions of your misdiagnosis?” I asked on Twitter. I had become accustomed to a steady trickle of responses to questions like these. But this time, I was inundated.
I read their stories as they came in—frank and heartbreaking tales, too often told by loved ones who survived the fat people they’d lost to misdiagnosis. Cancer, multiple sclerosis, thyroid conditions. And every time, the doctor’s recommendation was the same: “Just lose weight.”
And they weren’t alone. Rebecca Hiles was told that her respiratory issues—including bloody coughing fits—were due to her weight. It took six years for a doctor to properly diagnose her cancer. Vilma Soltesz didn’t even make it to the doctor’s office. She was kept from boarding an airplane that could have delivered her to lifesaving care. She died half a world away, waiting for a flight. Sarah Bramblette and Patty Nece shared their stories of misdiagnosis with the New York Times.
My experiences at doctor’s offices haven’t been great, but they were nothing like these stories. I found myself reeling with grief, overwhelmed with the vertigo of deepened mistrust. The world bent around me, like some dizzying funhouse mirror, reflecting back what I thought I knew. I found myself aching at the pain of so many people who look like me—so many who lost their lives, just for the fact of their bodies and the inability of health care providers to see their size as anything but some shameful personal failing.
For so long, bodies like mine have been called an epidemic, a threatening sickness tearing through the population like a wildfire through a countryside. Bodies like mine could swallow you whole, reduce your home to rubble. Our epidemic is insatiable, leaving only scraps in our wake. We are told the solution to our bodies is willpower and that more complex diagnoses are reserved for those who have shown the strength of character to shrink their bodies, who have proven themselves responsible by appearing thin. We have been made monstrous viruses, the fact of our existence certainly a threat to the stability and virtue of thinner people.
For so long, bodies like mine have been called an epidemic, a threatening sickness tearing through the population like a wildfire through a countryside.
But in these responses, in this research, a new epidemic emerges. This time, the epidemic isn’t our untamed bodies, but a distant lack of curiosity from health care providers. The epidemic is one of fear and disdain. Health care providers, the very people we trust with our bodies, will only hold them at arm’s length, leaving many of us to wither—and some of us to die.
The research on health care provider bias is damning. A 2003 survey of primary care providers found that despite their ostensible technical expertise, doctor bias ran deep. More than half viewed fat patients as “awkward, unattractive, ugly, and noncompliant.” And that bias isn’t invisible to patients: 53 percent of women say they’ve been shamed by their doctors, and 45 percent say they’ve canceled or postponed care until they lose weight.
And health care providers’ bias isn’t limited to size. Doctors underdiagnose women often, leaving 70 percent with “medically unexplained symptoms,” a strange and historic echo of the old diagnosis of “hysteria”—an old world catchall diagnosis attributed to insanity caused by uteruses. Disparities in health care mean that Black women are significantly more likely to die from breast cancer. Black patients of all genders are routinely undertreated for pain due to providers’ fantastical and explicitly racist beliefs about Black people having “less sensitive nerve endings than whites”; 19 percent of transgender Americans have been denied care because of their gender identity or presentation, and 28 percent experienced harassment in medical settings.
The list of repercussions for care provider bias is seemingly endless, with marginalized communities constantly paying the price. For those of us who are not thin, not white, not able-bodied, not cisgender, not straight, there is a strong chance we will face bias from our health care providers. In some of those cases, that will result in misdiagnosis. And some of those misdiagnoses will result in otherwise preventable deaths.
My stomach turned as I dug up these stories, excavated this research. I thought of the doctors I had known as a child, family friends, and pediatricians. I thought of the doctors I know now, people I admire greatly and love immensely. They are all deeply good, deeply human people, many driven by a lifelong desire to help those around them.
Like any of us, health care providers have their growing edges—the spots where their vision is blurred, the experiences just out of their reach. But, unlike the rest of us, they are in extraordinary positions of power, interpreting and divining our bodies. And when those growing edges aren’t pushed, their good-hearted desire to provide care is undermined by their own lack of understanding. When it comes to fat people, health care providers, like the rest of us, are products of a society that values thinness above all else.
The problem isn’t that doctors are bad people or that health care providers are intentionally malicious movie villains, cackling and tying the rest of us to the train tracks. The problem is that their biases—the biases so many of us hold—aren’t challenged in their training. And the rest of us pay the price.
I wanted to be able to call my friend back, provide her some promising news, but my research yielded nothing comforting. Her misdiagnosis wasn’t an exception—it was the rule.
Instead, I pushed myself to imagine a world in which all of us could trust our doctors. I tried to imagine my body being greeted as anything other than a failure. I tried to imagine a doctor uncoupling my appearance from my character—one who’s willing to see me as a good person, a determined and strong person, and also a fat person. I struggle to dream up a world in which my body isn’t written off as a death sentence for some original sin, an albatross that marks me with every health care provider.
Still, it feels so impossible. Still, it is so desperately far away.