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.
Empathy gap
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.
Hypochondria stereotype
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.
Another author, Abby Norman, wrote "Ask Me About My Uterus: A Quest to Make Doctors Believe in Women's Pain" of her struggle to get diagnosed and treated for endometriosis – a disease that almost exclusively affects women. Norman’s struggle was particularly rife with difficulties, as her severe problems set in during college and she did not have a supportive family to help her get treatment.
As her struggle to manage her illness continues, Norman is deeply aware of the complexities of securing and providing unbiased care.
Noting that not just women, but also people of color, children, and the elderly are often forced to settle for subpar medical care because of a doctor’s unconscious bias, Norman speaks of “layers of privilege” that influence how a patient is treated.
Of her own medical struggle, she told VOA, “there were certainly people in my peer group who would have had better access [to care], whether it be because they had family members that could support them or . . . were just in a better financial situation.
But then there also were people around me who had far, far less access, either because of their race, or their gender identity, or . . . any number of things.”
A study done at the University of Tennessee-Chattanooga in 2007 found that doctors tend to underestimate pain in patients they do not identify closely with – which, in an industry dominated by white men, translates to women, people of color, and children and the elderly. Strikingly, the study found that physicians were twice as likely to underestimate pain in black patients compared to all other ethnicities combined.
The U.S. Centers for Disease Control says black women are twice as likely to have strokes as white women, and are much less likely to survive them. Patient advocates say the lack of empathy that causes doctors to underestimate pain levels can also result in lower-quality care, allowing for more strokes and fewer good outcomes.
Liz Zubritsky, a science writer based in Virginia, says her mother once had to return to a Massachusetts emergency room three times in one night while trying to get care for her own mother (Zubritsky’s grandmother), who had flu-like symptoms and was running a fever of 37 degrees Celcius (100 degrees Fahrenheit) – low by standard levels, but high for Zubritsky’s grandmother. Doctors sent the women home twice, saying the fever was not high enough to warrant admission. Zubritsky says it was not until a male relative, an oral surgeon, called to intervene, that Zubritsky’s grandmother was allowed a bed at the hospital.
What was frustrating, Zubritsky said, is that “she felt like she was being dismissed as making too much out of something that was pretty minor . . . . The doctor was not willing to take my mother’s word for it that it was very unusual for her to have a fever of 100 degrees.”
Persistence pays
While writers like Norman and Dusenbery are anxious not to paint medical providers as evil or uncaring, the faults in the medical care system have made it clear that getting good care sometimes takes extra work.
Sasser says: “Be your own advocate.” Having survived several types of cancer and other medical conditions related to her Diamond-Blackfan anemia, Sasser has a notebook in which she compiles all information related to her treatment, so she can save time during appointments by showing doctors the appropriate records.
Zubritsky says she once researched and compiled a Venn diagram (a series of interlocking shapes) of her father’s medications to prove to a doctor that his discomfort was likely caused by a drug interaction.
Norman did her own medical research to convince a doctor her appendix was inflamed, a condition he had missed. The resulting operation relieved her of years of pain.
Dusenbery says when seeking medical help, be persistent – even if a doctor tells you it’s all in your head. “Don’t be afraid to seek out a second opinion, or as many as it takes,” she says. “Trust that you know something’s wrong. You know what’s normal for your body.”
Lastly, it’s helpful to take a friend or relative along to the doctor – for moral support, asking questions, taking notes, or even just verifying the patient’s experience. Dusenbery notes that it can be helpful to tell a doctor what the illness is preventing the patient from doing, not just how it makes them feel.
Dusenbery also notes that while one can get better medical care by being a more assertive patient, the solution to the problem is not for every patient to become a super-patient or resign themselves to subpar care.
“So much of what we’re doing is asking individual women to compensate for the failings of the system,” she said. “We shouldn’t rely on that individual self-advocacy. The system should be better for everybody.”
