Joyce Sasser was born in 1970 with no bones in her thumbs. Her doctors blamed thalidomide, a drug used to treat pregnant women experiencing morning sickness, until it was found to cause congenital abnormalities.
Sasser said her mother swore up and down she’d never taken thalidomide; the two risks she felt she’d taken were much, much milder. “She said 'if two aspirin or half a glass of champagne could have done it, I am responsible, but I didn’t take thalidomide,'” Sasser said.
Sasser says despite that denial, doctors continued to believe their theory and implemented treatments accordingly – including one that permanently stunted her arms.
It wasn’t until Sasser was 20 and pregnant with her first daughter that doctors found the real reason for her abnormalities: Diamond-Blackfan anemia, a congenital issue in which the bone marrow fails to make enough red blood cells. As her mother had insisted for years, it had nothing to do with thalidomide.
Sasser's mom’s experience – and the medical decisions she allowed, despite her protestations that the doctors had it wrong – are still all too common, even a half-century later. Sasser has learned over time how to manage the multiple medical difficulties that come with her condition, and, informed by her mother’s experience, she has learned to speak her mind about her medical treatment.
Doctors hold a revered position in American culture. But studies are showing that excellence of care often can depend on how much a doctor empathizes with his patient, and the medical field in the U.S. is still overwhelmingly dominated by white men.
A 2008 study of nearly 1,000 patients in an urban emergency room found that women waited an average of 16 minutes longer than men to get medication when reporting abdominal pain. They were also less likely to receive it.
A study published in 2000 by The New England Journal of Medicine found that because women’s cardiac symptoms differ sharply from men’s, women are seven times more likely than men to be misdiagnosed and discharged from the hospital during a heart attack.
“I was in the ER with stereotypical heart attack symptoms,” wrote Nicki Coast Schneider, who participates in a Facebook group for female heart attack survivors. “The ER doctor was in disbelief and brushed me off, but took my troponin (protein used in diagnosis of heart attack) level anyway. It came back elevated, he ordered another test. That one came back higher. He said the machine must be damaged so he tested his own troponin level. His came back normal. I was immediately admitted.”
Schneider said the doctor later admitted he might have sent her home if the emergency room had been busier. As it was, she said, he ended up thanking her for the lesson.
"He was young and I assume right out of med school," she said.
According to a 2014 online survey of more than 2,400 U.S. women with a variety of chronic pain conditions, nearly half had been told that the pain was all in their heads. A full 91% felt that the health-care system discriminates against female patients.
A diagnosis of depression or anxiety can further damage credibility.
Martha Blodgett is a heart attack survivor. She is also on medication for bipolar disease. “As soon as doctors find out I’m bi-polar, I’m written off,” she said. “I actually had a neurologist walk out on me without saying a word.”
"They don't listen," said Lori McElhaney, whose doctor prescribed her antidepressants for a year, despite a diagnosis of hypothyroidism -- a problem that requires an entirely different type of medication. McElhaney recently changed doctors. Her new doctor, a woman, "did more for me in one visit than he [her former doctor] did in over a year," she said.
Medical journalist Maya Dusenbery, whose book “Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick” outlines the ways sexism in medicine is destructive to women’s health, said doctors sometimes take women less seriously than men, adhering to a centuries-old stereotype of women as more apt to complain.
Looking at studies comparing treatment of men to treatment of women, Dusenbery said, “I didn’t understand why so many women were being treated as hypochondriacs when I didn’t know any women who were hypochondriacs.”
She also describes how diseases that are common to women often get less research funding than diseases that affect men – no surprise, given that most decision-makers in medical schools are men. As a result, she says, maladies seen as “women’s diseases” don’t get as much academic attention.