I Almost Died Because of Medical Bias—And I’m Not Alone

As a life-long athlete, I am no stranger to discipline, nutrition and exercise. In 2014 alone, I routinely squatted and deadlifted nearly three times my body weight, regularly ran on mountainous trails 8,500+ feet above sea level and completed a marathon and an ultramarathon.

I never felt better. Then, I almost died.

Shortly after my ultra, I felt exhausted and had menorrhagia so severe that I couldn’t leave the house without towels and extra clothes. I gained fifty pounds in about six weeks, with no alterations to my diet or exercise habits.

For almost two years, doctors dismissed my symptoms. Then, suddenly, I lost a third of my blood volume overnight, waking every half hour in pools of blood because of a large, undetected uterine fibroid. I was rushed to a surgeon who was the first doctor to recognize the seriousness of my condition, saying, “You have a case of BDT: bleeding to death.”

I wish I could say this led to a long-term medical solution. But, despite an emergency, life-saving surgery and another nine months of doctor and hospital visits, I am still chronically ill, have no diagnosis and have paid tens of thousands of dollars in out-of-pocket medical expenses. (That’s with employer-provided health insurance and a fair amount of privilege in navigating the medical system.)

What’s missing from the ongoing debates about healthcare policy is how frequently women and members of other marginalized groups face systemic bias in seeking medical care and treatment. With two versions of Trumpcare put forward that will leave over 22 million people without health insurance and discussions about repealing without replacing the Affordable Care Act, I fear for all of us who don’t just want to look well, but want to feel well—and don’t want to be shamed, blamed or deeply indebted in the process.

In seeking an accurate diagnosis, I’ve navigated the medical system in two kinds of bodies—one that looks athletic and one that looks overweight—each triggering a host of assumptions and biases in the medical practitioners overseeing my care. During this time, the fundamentals of who I am and what I value did not change; but my outward presentation did.

In my athletic-looking and unhealthy body, doctors believed me when I said I had a nutritious diet and exercised regularly. However, they assumed nothing was wrong because I looked stereotypically healthy. They applauded my discipline and encouraged me to eat more protein and iron and keep pushing through the fatigue.

In my overweight and unhealthy body (because the two are not one and the same), doctors agreed that I was unwell, but faulted my weight and lack of self-control. They refused to believe that I had a healthy diet or exercise regimen. One even told me, “If you’re gaining weight, it’s because you’re eating too much. You’re either measuring your food improperly or you’re lying to yourself,” framing her concerns about my health as a “lifestyle” critique, rather than focusing on the new batch of 14 cysts that appeared in my uterus. My body weight suddenly became the cause rather than another symptom of my ongoing illness and I was to blame.

While I study bias for a living, my shifting body provided me with a new and personal vantage point for understanding bias in the medical system. Ben Barres, a neuroscientist who transitioned from Barbara to Ben during his career, made a similar observation: navigating the same system in a different body can make you “vividly aware” of stereotypes and bias.

I’m not unique in experiencing medical bias or in nearly dying because of it. For example, the U.S. has the highest maternal mortality rate of high-income countries, with the death of women while pregnant or within 42 days after giving birth rising 27 percent from 19 to 24 per 100,000 from 2000 to 2014. This death rate is “a reflection of how society views women,” which, in the case of the U.S., situates women as less valuable than their reproductive functions and babies.

Overweight people who identify or who are identified as women or female-bodied are often faced with medical bias that sits at the intersection of gender and weight that tells us that we need to take up as little space as possible. This regularly leads to unhelpful advice, fat shaminggaslighting, elevated physiological stress, body image issues and a failure to accurately diagnose more salient health concerns, some that may even be causing weight-related symptoms.

Being overweight, however, does not automatically result in negative health consequences. Recent research, for example, shows that being overweight can even be a protective marker of health, sometimes guarding the body from other chronic conditions—such as heart disease, burns, stroke, cancer and pneumonia.

The popular narrative of “self-control” would have us believe that if we push hard enough, dig deep enough, eat little enough and move through our pain long enough, we, too, can have “strong,” “healthy,” productive bodies. Tapping into our willpower may help us achieve what might have once been unimaginable to us. But, taken too far, it can also be quite harmful—especially when the systemic practice of medicine wrongly equates fat with disease and thin with health. No amount of discipline and calorie cutting will “cure” conditions in which the overly simplistic “calories in, calories out” weight loss equation does not apply.

I’ve met a few rare doctors and nurses who treated me with a tremendous amount of compassion, validation, and like a person. Each time I did, I was overwhelmed with gratitude. In a profession with an oath to “remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug,” treating patients with respect and without bias should be the rule, not the exception.

Dr. Heather Metcalf is a Public Voices Fellow with The OpEd Project and is Director of Research and Analysis for the Association for Women in Science (AWIS) where she leads empirical research on equity, inclusion and the STEM workforce.

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Comments

  1. There are certain medical conditions which may be correlated with having a larger body type, often endocrine conditions.
    Correlation is not causation.
    Having a larger body type does not “cause” diabetes, hypertension, or any of the supposed “diseases of obesity.” which are actually diseases of aging. Hypertension is not in and of itself a “disease” in any case, it is an effect caused by a systemic imbalance. Idiopathic hypertension has no traceable cause and is the most common kind of hypertension. The “diseases of obesity” affect people of all sizes.
    Let us postulate that three people go to the doctor. They all stand 5’6″ tall. One weighs 60 pounds, one weighs 160 pounds, and one weighs 600 pounds.
    Medically speaking, it is likely that something is amiss with both the 60 pound person and the 600 pound person. However, assuming that nothing could be wrong with the 160 pound person because they fall within “normal” weight perimeters is erroneous. All three people need to be examined for potential health problems, regardless of how “healthy” they look.
    The 60 pound person is likely to be treated with compassion even if zir dangerously low weight is due to self-starvation.
    The 600 pound person will be treated with contempt and admonished to eat less, even if they are not overeating and their weight issues are caused by a physical dysfunction, likely an endocrine malfunction.
    Even if the 600 pound person’s weight is the result of massive overeating (and I mean really massive, not being “naughty” and having a big piece of pie every day after dinner), this is the rare case and is likely caused by a condition such as Prader-Willi syndrome, in which the sufferer is constantly hungry.
    All people deserve to be treated with compassion, regardless of their size. They should be able to express their needs and concerns to their doctor without fear of being shamed.
    Many larger people forego medical treatment because they fear being shamed by medical personnel.
    Many “normal” weight and slender people forego medical treatment because they have been led to believe that being a “proper size” means that they are healthy.
    I worked with a woman who was very slender. She ate “right,” didn’t smoke, didn’t drink, and had a “positive” outlook on life. She was 65 years old and should have had a long life ahead of her. She died from sudden cardiac arrest due to an undiagnosed heart condition, and everyone expressed surprise because she was thin and apparently “healthy.”
    Every patient deserves access to compassionate, affordable health care. No patient should be treated dismissively or with contempt because of their size.

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