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LINK Women Are Calling Out ‘Medical Gaslighting’

Studies show female patients and people of color are more likely to have their symptoms dismissed by medical providers. Experts say: Keep asking questions.

By Melinda Wenner Moyer
Published March 28, 2022

Jenneh Rishe could easily run six miles in under 45 minutes — until suddenly she couldn’t. In the spring of 2019, Mrs. Rishe, now 35, began finding her daily jogs a struggle.

Years earlier, she had been diagnosed with two congenital heart conditions that, she said, doctors told her would not affect her daily functioning. Yet she was getting worse: Intense chest pains woke her up at night, and she started using a wheelchair after passing out too many times.

Mrs. Rishe, who lives in Los Angeles, found a highly recommended cardiologist in the Midwest and flew there to see him. He immediately dismissed her symptoms, she said. “People who have these heart conditions aren’t this sick,” she remembers him saying. He prescribed a new heart medication, told her to exercise and sent her home.

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

“I constantly still think about how any run I went on quite literally could’ve been my last,” Mrs. Rishe said.

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

Patients who have felt that their symptoms were inappropriately dismissed as minor or primarily psychological by doctors are using the term “medical gaslighting” to describe their experiences and sharing their stories on sites like Instagram. The term derives from a play called “Gaslight” about a husband’s attempt to drive his wife insane. And many patients, particularly women and people of color, describe the search for accurate diagnosis and treatment as maddening.

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

Studies have shown that compared with men, women face longer waits to be diagnosed with cancer and heart disease, are treated less aggressively for traumatic brain injury, and are less likely to be offered pain medications. People of color often receive poorer quality care, too; and doctors are more likely to describe Black patients as uncooperative or non-compliant, which research suggests can affect treatment quality.

“I recall playing it over and over again in my head trying to figure out what I may have done to cause him to react this way,” said Mrs. Rishe, who is Black, about the Midwest cardiologist. “And, yes, racism crossed my mind.”

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

When Sarah Szczypinski, a journalist in Seattle, began experiencing knee pain and swelling in 2016 after giving birth to her son, she said that one doctor told her she had postpartum depression, while another told her she needed to lose weight and do squats — when in fact she was suffering from hip dysplasia exacerbated by her pregnancy.

She felt as though the doctors were telling her that her excruciating pain “was something that a woman needs to just live through,” she said. The condition had gotten so bad it ultimately required surgery, in 2020, to saw her leg bone in half and realign it with her hip. When she finally got the diagnosis, “I felt vindicated in a lot of ways,” she said. But ultimately, “it took three years to get a diagnosis and another two to heal.”

Some patients are more likely to be ‘gaslit and ignored’

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

In 1977, the U.S. Food and Drug Administration began recommending that scientists exclude women of childbearing years from early clinical drug trials, fearing that if enrolled women became pregnant, the research could potentially harm their fetuses. Researchers were also concerned that hormonal fluctuations could muddle study results.

Today — thanks in large part to a law passed in 1993 that mandated that women and minorities be included in medical research funded by the National Institutes of Health — women are more systematically included in studies, yet there are still huge knowledge gaps.

For instance, women with heart disease often have different symptoms from men with heart disease, yet doctors are much more familiar with the male symptoms, said Dr. Jennifer Mieres, a cardiologist with Northwell Health in New York. When “women show up with symptoms that don’t fit into the algorithm we’re taught in medical school,” she said, they get “gaslit and ignored.”

By the time 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, a heart murmur and pneumonia — yet the first doctor she went to diagnosed her with allergies, she said, and the second doctor thought she was pregnant.

“I left each time feeling disappointed, sad and uneasy, because I knew they had not solved my problem or helped me in any way, and it had been yet another wasted day,” said Ms. Cho, a New York City-based medical student. “It felt like they were saying, ‘It’s all in my head.’”

When Raimey Gallant, a 42-year-old writer who lives in Winnipeg, began dropping weight, losing her hair and breaking out in a full-body rash in her 20s, she said her male doctor told her she was “young, healthy and just lazy,” when in fact, later that year she was diagnosed with Graves’ Disease, an autoimmune disorder in which the body produces too much thyroid hormone.

She also struggled for 20 years with disabling period pain before finally getting diagnosed last year with endometriosis, an inflammatory disease characterized by the presence of endometrial-like tissue outside the uterus. “I’ll never get back the pieces of life I’ve lost to medical neglect,” she said.

How doctors and patients can elevate care

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

Doctors should also be given more time with their patients, and see fewer patients overall, Dr. Spencer suggested. Research has shown that when people are juggling many cognitive tasks, they are more likely to make biased decisions. One study found, for instance, that male doctors were less likely to prescribe pain medications to Black patients with lower back pain when the doctors were under stress.

Physicians are often working under difficult conditions that “make it easy to make mistakes and oversights,” Dr. Spencer said. “It’s like a gauntlet of problematic systems and processes that invite bias.” Researchers have also called for more training in medical school about unconscious bias and racism in health care. In 2019, California passed a law requiring hospitals to implement implicit bias programs for all health care providers who provide perinatal care.

Until more changes occur, women and patients of color might want to consider bringing a friend or relative with them to their medical appointments, said Dr. Alyson McGregor, co-founder and director for the Sex and Gender in Emergency Medicine division at Brown University. “It really helps if you have an advocate there that can intervene and say things like, ‘She is not normally in this much pain,’” she said.

And “see another doctor if you feel dismissed,” Dr. McGregor said. You might even want to consider seeking out a woman physician or a provider with better cultural competence, who may better “understand your perspective and language.”

Four months after Mrs. Rishe’s surgery, she wrote a letter to the doctor who dismissed her symptoms. “I drafted a whole message about how that interaction left me really upset and that I felt really small,” she said. She is relieved this particular doctor is out of her life, but she worries she might have a similar experience with another physician one day.

“It’s sad,” she said, adding: “We go in on the defense and ready for it to happen, because it’s so common.”

HippieChick58 9 Mar 31
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10 comments

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1

Maybe ten years ago I heard there are more women than men in medical schools and in law schools. What are the numbers now, especially of graduates of those schools?

2

Good! I'm glad women are speaking up. My mom was diagnosed as having "panic attacks" over and over in the days leading up to her death. She up and died suddenly at age 66, and autopsy results say she had a heart condition and died from a heart attack, something women "didn't have" in those days, though we know better now.

Now, my daughter has been having "panic attacks" and it wasn't until one lasted for 6 hours that her doctor actually looked into it seriously and it turns out she has a heart condition and needs heart surgery! This was last October. Her evaluation appointment for the surgery wasn't until this week, 5+ months after her diagnosis, and now her surgery is scheduled for about 6 weeks from that appointment. I know doctors are jammed right now, but that's a long time to worry about her suddenly dying of a heart attack like her grandmother did, a fear she actually does have and rightfully so.

I will have my annual check up next week and I will mention this to my doctor (a new one for me) to see if there is something hereditary I should watch for. I used to have panic attacks when I was my daughter's age, but they stopped happening when I stopped drinking so much coffee and left my marriage -- not sure which was the cure - maybe both, haha!

4

Well again HCR in her history chat today on FB covers how it's actually written into our laws as the country was getting settled around the Chesapeake Bay. The development was different than up north but women were treated pretty much the same.
World wide women get the short end of things in some areas and medical treatment is one of them.
I find the internet pretty helpful plus my mom was an x-ray tech, I read her medical books as a kid so things like germ theory an medical terms don't bother me. I have certainly had my share of shitty doctors and now that I'm 69 a lot gets dismissed as age related and while not as bad as Anne's some of my issues do relate to bad treatment by the medical profession.

6

Been running into this my entire life, but much, Much more since I got older! Scary as F!
Just 3 of the several doctors I have fired:

  1. the GYN who told me to get a smaller-penis boyfriend, when I complained about very heavy periods & pain with sex. Actual problemS were endometriosis, Fibroid tumors, & huge ovarian cysts. Final cure, a complete hysterectomy (including ovaries) at age 29.....perhaps unnecessary if he had paid attention 3 years earlier.
  2. The guy who dismissed a constantly-enlarging +/-1" growth on One temple, with "octopus arms" heading to my eye..."lose weight & it will go away". (My dog could have done better, no shit!)" Benign tumor, surgically removed.
  3. I became Incredibly sun-sensitive, to the point of "rashes" after taking the garbage out on a north-facing porch for <1 minute....the rashes swelled my arms so badly I couldn't bend them & the skin wept & cracked, to the point it was called "3-degree burns". Doc: "But if I hospitalize you, you will probably catch MRSA". Lived like a mole for 2 years! Just needed to stop a medication Well-Known for increasing sun sensitivity........
  4. And the latest, I "caught" Congestive Heart Failure from taking 2 prescribed diabetes meds, Victoza & Avandia, which should apparently Never be given together...you can now Google it! Life expectancy is now about 5 more years, & the last 3 will suck.

I could go on & on & on, but I am feeling a tad depressed.....

Incidentally the very very worst GYN I ever had was a woman.....

I am so sorry to hear your prognosis Anne...it's incredible how so few doctors keep up on drug interaction leading to outcomes such as yours. Have you requested a 3rd review of options available?

I'm just glad you've got me.

@Charlene I am attempting to get into various clinical trials, there is a lot going on in the field right now BUT since my CHF is not the result of an actual heart attack, I do not qualify for most of them.... a nice "Catch-22" for me, right?

@AnneWimsey Do you have a Pulmonologist? If so, see if they can get you into trails from that angle, or at least order an CTcadiogram as another option..

3

I've recently had a doctor try to whine and whedle me to accept an unnecessary exploratory surgery,and a different one try to talk over me ala Tuckums, all to no avail in both cases..I always demand respect and straight answers from Doctors..If I'm not satisfied it's buh.bye

5

This in particular is something I'm amazed has not been a major part of the culture correction movement. Heartbreaking the things the medical community forces women to endure. Quality of life shattering things. Unnecessary and cruel for no discernible reason.

6

I recently needed to change doctors because the one I had was an asshole. Maybe medical schools also need to do a psychological assessment before admitting students.

I am extremely lucky with my present doctor. If he diagnoses something that I have not heard of previously, such as osteopenia, I pump him dry of what he knows, and then do further research on the Internet, mostly government health web sites and medical research papers. He also listens to me. I also know more about managing my own idiopathic reactive hypoglycemia than anybody else on this planet, and I can spend quite some time educating any new medic (nurses, doctors, surgeons) that ends up treating me for any reason.

9

I was just discussing this with someone on a Facebook heart disease page. My symptoms were totally dismissed until I happened to see a woman physician's assistant who ordered an arterial calcium test. She diagnosed my problem.

8

This happens CONSTANTLY. And they say we make it up, we're hysterical, etc. It gets beyond frustrating.

10

This has been going on for millennia and much to the disgrace of the medical community, it is STILL going on. The word "hysteria" comes from the Greek word for "uterus."

From my first period until I was in my late 20s, I had horrible, horrible cramps that sent me to bed for two days. My mother took me to the doctor, but nothing helped. She took me to another doctor and it was plain that he thought it was in my head, not my reproductive organs. I now know that I had dysmenorrhea--maybe it was not a commonly known problem in the late '60s/early 70s, but I do know that many doctors did not take menstrual pain seriously.

I had a girlfriend in high school who had this problem. Was no fun for either of us.

I had a similar experience, would lay on the floor and cry for two days along with very heavy bleeding. Was told that having a kid would fix it. WTF. Next doc put me on really strong BC pills. When I went to Planned Parenthood to get my refills the doctor there was horrified and immediately lowered the dosage.

@MizJ your experiences mirror mine! Heavy bleeding, cramps and was told that having a kid would fix it--and actually, it did. After I had my first son, the problems stopped. Some info on this:

[pubmed.ncbi.nlm.nih.gov]

However, I had a C-section, but being pregnant seemed to help. The report says that length of gestation could help, and I went at least two weeks over my due date.

Birth control pills did nothing to alleviate the pain and heavy bleeding for me.

@Gwendolyn2018 The doc told me about having a kid when I was in my teens! I never wanted one but at least menopause gave me relief. BC pills helped me a little. I used to put a towel on a trash bag to sleep on to save the mattress. Male bosses always thought I was being ridiculous, it caused a lot of problems. We survived 🙂

@MizJ Geez Louise! Just what you needed--to be a teen mom! People whom I knew just said that "when" (assuming that I would) have a baby, it would go away. I didn't have one until I was 27.

If you suffered until menopause, the medical community really let you down.

I had an early menopause and occasionally had severe bleeding. Otherwise, I had no hot flashes or other things that plague us. I said it was to make up for the years I suffered from dysmenorrhea.

Oh, I did leave my husband of 25 years shortly after the onset of menopause. 😛

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