Women report doctors for gaslighting after being misdiagnosed

Jenneh Rishe could easily run 10km in less than 45 minutes – until suddenly she couldn’t. In the spring of 2019, Rishe, now 35, began to find her daily runs very difficult.

Years earlier she had been diagnosed with two congenital heart problems that she said doctors said would not affect her daily activities. But she was getting worse: severe chest pains woke her at night, and she had to start using a wheelchair after passing out several times.

Rishe, who lives in Los Angeles on the west coast of the United States, found a highly recommended cardiologist in the Midwest and traveled there to see him. He immediately downplayed her symptoms, she said. “People who have these heart problems don’t get as sick,” she remembers him saying. The doctor prescribed a new heart medication, told her to exercise, and sent her home.

Dissatisfied with the care, Rishe went to another doctor, who ordered extensive tests that found her arteries were spasming from lack of oxygen. “I was basically having mini-heart attacks every time I had chest pain,” she said. Two months later, she underwent surgery to correct the problem, which she later learned may have saved her life.

“I still often think that any race I did could literally have been my last,” Rishe said.

Research suggests that misdiagnosis can occur in one in seven encounters between a doctor and a patient, and that most of these errors are caused by the physician’s lack of knowledge. Women are more likely than men to be misdiagnosed in a variety of situations.

Patients who felt that their symptoms were inappropriately considered unimportant or psychological by physicians use the term “medical gaslighting” [que indica a deslegitimação de posicionamentos femininos como se fossem exagero ou loucura] to describe their experiences and share their stories on social networks like Instagram. The term derives from a play called “Gaslight” about a husband who tries to drive his wife mad. And many patients, especially women and people of color, describe the search for a correct diagnosis and treatment as maddening.

“We know that women, especially women of color, are often diagnosed and treated differently by doctors than men, even when they have the same health conditions,” said Karen Lutfey Spencer, a researcher who studies medical decision-making at University of Colorado at Denver.

Studies have shown that, compared to men, women face longer periods of being diagnosed with cancer and heart disease, are less aggressively treated for traumatic brain injury, and are less likely to receive pain medication. People of color often also receive substandard care, and doctors are more likely to describe black patients as uncooperative or reticent, which can affect the quality of care, according to the survey.

“I remember going over it over and over in my head, trying to remember what I could have done to make him react that way,” Rishe, who is black, said of the midwestern cardiologist. “And yes, racism crossed my mind.”

Women say doctors often attribute their health problems to their mental health, being overweight, or a lack of self-care, which can delay effective treatment. For example, Spencer’s research suggests that women are twice as likely as men to be diagnosed with mental illness when their symptoms are consistent with heart disease.

When Sarah Szczypinski, a journalist in Seattle, started experiencing knee pain and swelling in 2016 after having her child, she said one doctor told her he had postpartum depression, while another told her he needed to lose weight. and doing squats – when in fact she suffered from hip dysplasia exacerbated by her pregnancy.

She felt as if the doctors were telling her that the excruciating pain she was in “was something a woman has to endure,” she said. The condition had gotten so bad that she needed surgery in 2020 that sawed her femur in half and realigned it with her hip. When she finally got the diagnosis, she felt “vindicated in so many ways,” she said. But in the end “it took three years to get the diagnosis and two more to be cured.”

For some patients it is worse

Women can be misdiagnosed more often than men, in part because scientists know much less about the female body than the male, although “there are biological differences that go down to the cellular level,” said Chloe Bird, a sociologist at the School. Pardee RAND Graduate who studies women’s health.

In 1977, the US Food and Drug Administration (FDA) began recommending that scientists exclude women in childbearing years from initial clinical trials, fearing that if participants became pregnant, the research could harm their fetuses. The researchers were also concerned that hormonal variations would hamper the accuracy of the results.

Today — thanks in large part to a law passed in 1993 that requires women and minorities to be included in medical research funded by the US government’s National Institutes of Health (NIH) — women are more systematically included in studies, but still there are huge knowledge gaps.

For example, women with heart disease often have different symptoms than men with the same problem, but doctors are much more familiar with male symptoms, according to Dr. Jennifer Mieres, a cardiologist at Northwell Health in New York. When “women show up with symptoms that don’t fit the algorithm we learned in medical school, they are misled and ignored,” she said.

When Michelle Cho, 32, was diagnosed with systemic lupus erythematosus, a disease in which the body slowly attacks its own tissues, she had developed kidney failure, heart murmur and pneumonia, but the first doctor she saw diagnosed her with an allergy, and the second thought that she was pregnant.

“I left disappointed, sad and apprehensive, because I knew they hadn’t solved my problem or helped me in any way, and it had been another wasted day,” said Cho, a medical student who lives in New York. “I felt like they said, ‘It’s all in your head.'”

How to improve service

It’s hard to know how to begin to address these systemic problems, experts say, but scientists say at the very least there needs to be more research on women’s health conditions.

Doctors should also spend more time with each patient and see fewer patients overall, Spencer suggested. Research has shown that when people perform many concurrent cognitive tasks, they are more likely to make partial decisions. For example, one study found that male doctors were less likely to prescribe pain medication to black patients with back pain when the doctors were under stress.

Doctors often work in difficult conditions that “make it easy to make mistakes and slip ups,” Spencer said. “It’s like a set of problematic systems and processes that invite prejudice.” The researchers also called for more medical school training on unconscious prejudice and racism in health care. In 2019, California passed a law that requires hospitals to implement implicit bias programs for all healthcare providers offering perinatal care.

Until more changes are made, women and patients of color may want to bring a friend or relative with them to doctor appointments, said Dr. Alyson McGregor, co-founder and director of the division of sex and gender in emergency medicine at Brown University. “It really helps if you have an advocate who can step in and say things like, ‘Normally she doesn’t feel this much pain,'” she said.

“And find another doctor if you feel underappreciated,” McGregor advised. You could even look for a female doctor or provider with greater cultural competence, able to “better understand your perspective and your language.”

Translated by Luiz Roberto M. Gonçalves