Women continue to face misdiagnosis, dismissive doctors, especially for chronic and pain-related conditions
By: Sofia Saavedra and Jasmin Dinh
Youthcast Media Group®
Imagine you walk into a doctor’s office because you’ve been struggling with pain for weeks and finally can take a day off work to get checked out. But instead of finding relief or solutions, the doctor dismisses your symptoms, brushes off your concerns or outright doesn’t seem to believe you. You’re stuck, in pain, and without any treatment or support.
This scenario is reality for many people, particularly women. Research shows many patients are dismissed and not taken seriously by medical professions when it comes to their health concerns.
Barbara Grau doesn’t need to imagine this. She knows firsthand the dangers people face when their health concerns are dismissed. She spent years searching for answers to her chronic pain and health conditions, that have included infections, immunodeficiencies, heart problems, arthritis, a stroke and transient ischemic attacks, which are known as mini strokes.
She says she had “good doctors” until she was 18, but has been plagued by poor treatment, challenges finding specialists and discrimination since then, she said. In 2014, Grau finally got a diagnosis of lupus, but she moved from Iowa to Kansas, changed doctors and had trouble even getting that condition treated correctly. The mistreatment means she can no longer take some of the medication that would have worked years earlier.
“A doctor who may not read my record may not believe me,” said Grau. “The bottom line is that they needed to believe what I was telling them and they chose not to do so.”
In addition to her physical pain, the long fight to get help has taken a toll on her mental health too.
“It was very damaging. It’s something I still have to fight with,” said Grau. “I get anxious before every doctor appointment and concerned about how it's going to go.“
For some disorders, the consequences can be fatal. An estimated 795,000 patients die each year or are permanently disabled due to an untimely or incorrect diagnosis, according to a study published by the medical journal BMJ Quality & Safety. Women and ethnic and racial minorities. are 20% to 30% more likely than white men to experience a misdiagnosis, the study by researchers at Johns Hopkins and Harvard universities reported in July 2023.
Vascular-related incidents, infections and cancers accounted for 75% of the serious harms. The overall average error rate across diseases was estimated at 11.1%, but ranged from 1.5% for heart attack to 62% for spinal abscess. Stroke, the top cause of serious harm from misdiagnosis, was missed in 17.5% of cases.
Natalie Portillo, 18, of Arlington, Virginia, says she accompanies her mother, Doris, to doctors’ appointments to both translate and “advocate for her needs.”
“As an older Latina woman, who speaks a small amount of English, my mother can be and has been dismissed by doctors,” said Natalie, whose parents emigrated from El Salvador. “It is sadly the reality we live in, people of color, especially women, are often dismissed because doctors tend to not take their concerns seriously, as they just assume they are overreacting.”
Natalie said her mother “has endured so much in El Salvador and in the States, yet she always puts her children above her.”
“I don’t know how I could ever repay her, that is why I tend to always help her whenever I can, even if it is to translate in order for her needs to be met,” said Natalie, a freshman at University of Virginia.
Experts say the causes of medical mistreatment have deep roots. Kathleen Bartholomew, a nurse educator and author who is an expert on health care culture, said these issues are embedded into our society and health care system. She points to a “culture of self silencing where…it doesn't matter what level you are, even physicians are silent. So this is one of the biggest impediments to a culture of safety,” Bartholomew said.
Patients can begin to doubt themselves, but so can doctors and physicians –– this is when it starts to become dangerous, she explained.
“This is why our patients are not safe. And quite frankly, nobody's working hard to make it safer,” Bartholomew said.
Bartholomew believes that profits have become the main priority in our healthcare system, not patient care.
“Our healthcare system is designed as a business that profits on disease and illness,” she said. “It makes more people sick every year. So what we need is a different structure.”
Until structural changes are addressed, Grau and Bartholomew offered suggestions on how patients can confront these systemic challenges.
For one, Grau wishes she had someone accompany her to her doctor’s appointments.
“I think that would have helped,” Grau said. “If you have someone who lives in your area who has intimate knowledge of what you're experiencing every day about your symptoms and signs, they can vouch for you and your veracity of your story because the male-dominated system tends to dismiss women in general.”
Another tip she offers is to gather evidence of your symptoms and keep logs of when they occur and how long they last.
“I didn't learn soon enough to start to take photographs of the things that were occurring,” Grau said. “It’s crucial to get photographic evidence of rashes, hives or any type of physical manifestation of the illness you are experiencing. It makes a phenomenal difference.”
Once she did that, she could shown the photos to healthcare professionals rather than just describe past outbreaks - to skeptical doctors.
Bartholomew said the language you use can also affect the way you are treated.
“Speak from your heart, not from your head. You don't say what you think they want to hear. You just simply tell your story as truthfully and as honestly as you can,” said Bartholomew. “If you're trying to figure out how to say it so that they'll hear it, then you're not standing in your full power, you're not standing in yourself,”
If pain is the problem, Bartholomew suggests using metaphors “as a way to add clarity.” As examples, she suggests “jabbing needles” or that it’s “like an elephant sitting on my chest.”
Bartholomew also says body language is important and recommends asking healthcare professionals to stand or sit so they are at eye level with you.
“Make sure that there's direct eye contact. If somebody's writing while you're talking to them, wait till they're done. And if they're like, ‘what are you waiting for?,’ [say] ‘I'm waiting for your attention,’” Bartholomew said.
Lastly, she suggests what she calls a “read back.”
“A read back is really important because it clarifies that you know what they know. And it also slows the other person down,” Bartholomew said.
Grau wishes she knew these methods when she was younger, though she is having better successes with her doctors now. However, she remains in near-constant pain and believes a decades earlier diagnosis would have changed her life.
“Men in general are dismissive of women, but women in power can be dismissive too,” said Grau. “When you have that evidence, you have something verifying what you're saying. Otherwise you can be too easily dismissed.”
Sofia Saavedra and Jasmin Dinh are juniors at Virginia’s Annandale High School, one of YMG’s school partners.
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