At 17 years old, Rebecca Hiles came down with bronchitis and walking pneumonia. Three years later, she was still coughing every day. "Doctors said, 'If you lost weight, you wouldn't have this many coughing fits,'" she recalls. One night, she started coughing up blood, but when she went to the ER, her doctors said it was probably just a broken blood vessel and sent her home with an inhaler. "That was the first time I started to think that maybe it wasn’t just weight," she says.
In her first two years of college, Hiles danced a couple times a week and trudged up the massive hill on campus (nicknamed Cardiac Hill) daily. "I was very active, but I wasn't losing weight and my breathing was just getting worse," she says. "Any time I went to see the doctor to figure out why I couldn't shake this cold or that cold, I was given an antibiotic and told to lose weight."
By 23, the cough got so bad that Hiles began to have trouble controlling her bladder during coughing spasms and finally had to rely on adult diapers. The fits sometimes made her throw up. She spent many nights curled around a bucket in a hot shower, coughing and vomiting, hoping the steam would make it easier to breathe. When blood tests kept coming back normal, her doctors would say, "We don't know what to tell you - it's clearly just weight-related."
It's as true in the medical field as it is in the social and professional realms: Your weight has a big impact on how you are perceived. Doctors readily admit to judging their fat patients. A 2003 survey of 620 primary care physicians found that more than half viewed obese patients as "awkward, unattractive, ugly, and noncompliant." As terrible as it is to be denied a promotion or receive poor service at a restaurant because of your size, being diagnosed through the lens of a doctor's weight bias could be lethal.
At the height of her coughing fits, Hiles, now 28, was taking so many medications that they couldn't fit in a gallon-sized ziplock bag: cough syrups, antacids, steroids. "Nothing was working," she says. She began to wonder if she was a hypochondriac. Desperate for help of any kind, she researched in-patient mental health facilities. "I thought I was losing it."
In one 2014 study, 53 percent of all women said they had been shamed by a physician, compared to 38 percent of the men. And they reported that their weight and their sex lives were the top two reasons for such experiences.
Sesali Bowen, 30, recalls one experience that hit on both issues. At 23, she went to a gynecologist for STD tests and to inquire about going back on the Pill. The doctor took one look at her and refused, saying Bowen was too overweight; she didn't want to be liable if Bowen had a stroke.
But Bowen's doctor wasn’t simply respectfully informing her of the risks of hormonal contraceptives for someone of her BMI. "I could just tell that she was kind of disgusted with me," she recalls. "I think that she was not only judging my sexuality and my lifestyle around sex but also, like, measuring that up against the way my body looked. It became a sort of condemnation of the fact that I was a young, black woman having sex and also that I was a fat, black woman having sex."
There’s no evidence that fat-shaming by healthcare providers pushes people to lose weight, but plenty of statistics demonstrate that it makes patients reluctant to see a doctor for care. In a 2016 nationally representative survey, 45 percent of women said they’d somewhat commonly cancelled or postponed a doctor’s appointment because they wanted to drop a few pounds first. According to a 2002 study, even many women who fell into the normal BMI range reported delaying medical care if they perceived themselves to be overweight.
"A lot of fat women don’t want to go to the doctor, get weighed - usually in a very humiliating and kind of semi-public fashion - and then be given a lecture about their weight," says Michelle Allison, a registered dietician who writes The Fat Nutritionist blog. Indeed, studies have found that overweight women are less likely than average women to get preventative care like pelvic exams, breast exams, and mammograms.
Bowen had actually been trying to stay proactive about her sexual health, and she came away from the encounter feeling awful. These days, she seeks out recommendations of fat-friendly healthcare providers from her social circle, which she believes has helped immensely. But she admits that she avoids medical care more often than she should. "I do think I've internalized the idea that my weight is probably the cause for everything," she says. "So I won't go to the doctor because I probably just need to lose weight and I know that, so I'm not going to spend $30 on a co-pay to be told it. I shouldn't do that, I know, because it could be something.”
Hiles's coughing fits were getting steadily worse, but her healthcare providers were still so fixated on her weight that they ignored symptoms that should have been worrisome in any active young woman. "Instead of listening to a patient when they say, 'Well, I'm trying to work out, but then I can't breathe,'" she explains, "they just dismiss them by saying, 'Well, if you lose a little bit more weight, it's going to be easier for you to breathe.'"
At age 23, Hiles went to a new primary care physician, who suggested - for the first time - that she see a pulmonologist to do some tests on how her lungs were functioning. "She listened when I said, 'Look, I've been working out.' And she listened to my daily activities and the food I was eating. And she said, 'Okay, if you're still having these symptoms and doing all these things, we need to talk to a different person.'" By now, Hiles had been suffering for six years.
Fat patients often suffer dangerous delays in getting a proper diagnosis because doctors are so quick to blame any and all symptoms - from hip pain to shortness of breath - on being overweight. "I believe that unfortunately, in some cases, doctors use weight as a means to shift all of the burden of medical management onto the patient as an individual, rather than actually doing their job," Allison says.
Doctors tend to treat symptoms that would be cause for grave concern in thinner patients as perfectly normal in fat ones. Cathy*, 41, tried for years to get an explanation for a host of mysterious symptoms. She pointed out to her doctors that her symptoms matched those of celiac disease, but they refused to even test her for the condition. One told her directly, "You're too fat to be celiac." Seven years ago, she decided to try giving up gluten anyway; she’s felt better ever since.
Another woman, Elizabeth April, 32, says she was lying in bed when she suddenly began experiencing severe heart palpitations and went to the ER. It wasn't until the doctors finally asked if she worked out, and she told them she was running up to 30 miles a week to train for a half-marathon, that they started taking her symptoms seriously. "They were like, 'Ooooookay!' And that's when things escalated. Because they had assumed it was just me being out of shape," she says. Blood work revealed she had a thyroid condition.
By seeing fat as a disease to be fixed, and losing weight as the cure, healthcare providers risk missing all the actual diseases for which unexplained weight change is a symptom. If someone has gained weight relatively quickly and unintentionally, there are any number of underlying medical conditions that could be to blame, from tumors to kidney failure to hypothyroidism.
The same is true of rapid weight loss. Sherrill*,65, lost 30 pounds in just a few weeks when she was infected with Lyme disease. When she went to her primary care doctor, she was 118 pounds and suffering from hourly episodes of flushing and sweating, vertigo, muscle aches, and fatigue. He congratulated her: "Hey, that’s a good weight on you!"
Polycystic ovary syndrome (PCOS) is the most common endocrine disorder among women, affecting up to 10 percent of the female population. Yet many patients go undiagnosed for years because doctors view them as "just fat." "Oftentimes, people with PCOS go undiagnosed because one of the confounding issues with PCOS is being overweight or obese," says obesity researcher Deborah Clegg, PhD, a professor in general internal medicine and biomedical sciences at Cedars-Sinai. "And often physicians blame excess weight on lack of activity and over-eating rather than looking at the root cause – which, in the case of PCOS, is an imbalance of sex hormones."
"It wasn’t until I was 27 that a doctor said for the first time, 'Let's run some blood tests to see if there's some type of hormonal cause for you being overweight,'" Bowen notes. "No one had ever before taken any action to check that I didn't have PCOS or some other kind of condition that might contribute to the weight. It was always that the weight was the inevitable outcome of my bad decisions, and so I just needed to fix it."
Some physicians, in fact, don’t even believe in PCOS itself. On the blog First, Do No Harm, an online trove of reader-submitted "stories of fat prejudice in healthcare," one woman with the disorder describes being informed by her new doctor: "PCOS isn’t a real disease, it's been made up by fat women." And it's largely because of beliefs like that one that the condition remains so poorly understood. "Because people have just assumed, 'Oh you're fat, therefore you have PCOS,' people haven’t looked at the underlying causes of PCOS," Clegg says.
"Lipedema is another of those diseases that’s seen as 'Oh, you're just fat,'" Clegg continues. "Well, no - you have dysfunctional adipose tissue that's incredibly painful and weight loss is going to do absolutely nothing to improve that condition." The tissue disorder, which causes an abnormal buildup of fat cells in the hips and legs that's incurable, progressive, and painful, is found almost exclusively in women, and is estimated to affect a whopping 11 percent of them.
Ashley*, 38, always had "thick legs and a big butt." For years, she didn’t give the mysterious pain in her legs much thought. "They swell and they're very tender. Like, I have a really tiny dog and when he walks on my legs it really hurts." But it hadn’t even occurred to her to complain to a healthcare provider about that. "I've kind of always been in pain. I just thought this is what I'm supposed to feel like. I don't know, maybe I thought being overweight was painful."
It wasn’t until she started to get recurring leg infections in her late 20s that she started wondering whether there was something else going on. "Even the tiniest rash would turn into a staph infection," she says. She asked doctors why this kept happening. "Every doctor I went was just like, 'You need to lose weight. You need to lose weight.'" She was ultimately diagnosed with lymphedema, a swelling of the lymph nodes, which can be a side effect of lipedema. But Ashley was simply told that it would improve if she lost weight.
About a year later, she ended up in the ER with a severe flu. The ER doctor noticed the compression stockings she was wearing to keep her leg swelling down and asked why she wore them. When Ashley replied that she had lymphedema, he asked what she'd been told about why she had it. "I said, ‘Well, I guess because I'm overweight.' And he shook his head and said, 'No, no, you have lipedema,'" Ashley says. "He looked me in the eyes and was like, 'It's not your fault.' It was kind of an emotional moment for me, because that's not something I'm used to hearing from doctors."
These days, when Ashley sees women on the street who look like they might have lipedema, she's tempted to stop them and say, "Hey, I know you've probably always hated your body..." she says. "I think that if something like this were affecting 11 percent of men, it would be everywhere. A lot of women go their whole lives without knowing it."
Before Hiles made the appointment with the pulmonologist, another bloody coughing fit landed her in the ER. This time, the doctors did a more powerful CT-scan, rather than an X-ray, and found a tumor in her bronchial tube. Less than two weeks later, she had surgery to remove her entire left lung, the bottom half of which was a black, rotting piece of dead tissue.
"When my surgeon told me a diagnosis five years prior could’ve saved my lung, I remember a feeling of complete and utter rage. Because I remembered the five years I spent looking for some kind of reason why I was always coughing, always sick," Hiles wrote on her blog. "Most of all, I remembered being consistently told that the reason I was sick was because I was fat."
We tend to trust doctors’ science as objective and their clinical judgments as impartial. As Sesali says, “I would never think to question a doctor. They’re the doctor: They know more about my body than I do.” But the alarming truth is that medicine reflects the biases of the culture at large. “I think doctors are notoriously blind to their own prejudices,” Brown explains. “And we’ve been blind to their prejudices too.”
*Names have been changed.
Maya Dusenbery is the author of Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, in which parts of this piece first appeared. She is the editorial director of Feministing.com.
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