January 20, 2023 – Preslee Marshall, a 25-year-old resident of Canada, began having severe electric shock-like sensations shooting throughout her body. It started happening once a week, then progressed to once a day, then multiple times a day, she says. Worried, Marshall, who co-manages a public relations agency, consulted a neurologist.
“He told me my symptoms were caused by anxiety. He said, ‘If you get your nails done, you’ll feel better,’ which shocked me,” she says. “But I took his advice, got my nails and hair done, went for a massage and got a facial, and my pain kept getting worse.”
Eventually, Marshall was diagnosed with fibromyalgia – a long-lasting condition that often causes pain and tenderness throughout the body – by a rheumatologist after a thorough examination and an MRI to rule out other serious conditions, like multiple sclerosis, which can have similar symptoms.
Lorrie Lewis, a 56-year-old social worker, was also brushed off by her doctor. Her daughter, Beth DeCapua, a house painter in Toms River, NJ, says her mother had consulted a doctor because she was having a hard time coordinating her hands while trying to dust the coffee table.
“The first doctor my mother saw said, ‘You’ve got to expect this at your age,’ and when she went to a second doctor, he advised her to go home and relax with a glass of wine,” DeCapua recalls. Two years later, Lewis was diagnosed with Parkinson’s disease, which eventually claimed her life.
Obadiah J., a clergyman from New York who asked that his last name not be used for this article, began feeling “terrible heartburn” when he was 15. He consulted a doctor who told him that young men “don’t get heartburn. ”
“It wasn’t until I got married and my wife introduced me to a gastroenterologist that I got diagnosed with a hiatal hernia and an inflamed esophagus,” he says.
Having one’s symptoms dismissed by a health care professional is sometimes called “medical gaslighting,” a term that comes from Gas Light, a 1938 play that was later adapted into a movie, in which the husband manipulates his wife into questioning her perceptions of reality and her sanity.
Karen Lutfey Spencer, PhD, a professor of health and behavioral sciences at the University of Colorado in Denver, says that while “medical gaslighting” has become a popular term to describe the downplaying or dismissing a patient’s symptoms, it may be a label that’s not accurate.
“The word ‘gaslighting’ implies that someone is purposefully trying to mess with another person’s head, as the husband did in the movie. But we have many well-intentioned health care providers who are not deliberately trying to ‘gaslight’ their patients,” she says. That said, the absence of malice does not justify dismissing a patient’s symptoms, she notes.
‘Horses’ vs ‘Zebras’
In medical school, doctors are taught, “If you hear hoofbeats, think horses, not zebras.” This encourages providers to look for the most common rather than the most exotic diagnosis for a person’s condition. But that approach might unintentionally lead to downplaying a patient’s symptoms – especially in today’s high-pressure health care environment, where providers are forced to quickly find out what the patient’s problem is.
So, why would common conditions like fibromyalgia, Parkinson’s, and a hiatal hernia be considered “zebras”?
Spencer, a medical sociologist whose research focuses on medical decision-making, health care disparities, and patient-provider relationships, says that some providers have biases that affect their diagnoses and treatment decisions.
“Research has shown that women, people of color, older people, non-heterosexual people, and individuals with ‘stigmatized’ conditions – like being overweight or having a mental illness – are more frequently misdiagnosed and their symptoms are more frequently dismissed,” she says.
One reason is that much of the research that informs diagnosis and treatment was historically performed on white males. “There’s much less research into other populations with other biology. It’s assumed that what is known about white males will translate into other groups, and that’s simply not always true,” Spencer explains.
For example, heart problems are often misdiagnosed in women because heart disease has been regarded as a “male” condition.
“A doctor in one of my studies once reported that the encyclopedia he used in medical school to learn about angina had an illustration of an elderly gray-haired white man clutching his chest. This picture, which hasn’t changed in decades, reinforces the message that heart disease is a white male problem.”
These various kinds of influences become “baked into medical training.” So when a woman has heart symptoms,[doctors] may be less certain that it’s a heart problem and give more consideration to other causes, like stress or depression,” says Spencer.
Similarly, Parkinson’s disease statistically affects more men than women, so some doctors may not think of it in a woman who has symptoms, suggests Christine Metz, PhD, a professor in the departments of Obstetrics and Gynecology and Molecular Medicine at Hofstra/Northwell, Long Island, NY.
Common But Hard to Diagnose
Certain types of illnesses are more likely to be missed or dismissed, according to Allyson Shrikhande, MD, chief medical officer and co-founder of Pelvic Rehabilitation Medicinea national women’s health care company that specializes in pelvic pain.
Endometriosis is a condition that causes pelvic pain, and although it is very common – 1 in 9 women are affected – there are no definite lab tests or X-rays to diagnose the condition, which is often diagnosed only during surgery.
“Women experience pain in the lower abdomen, often during intercourse, and they’re told by their physicians to relax and have a glass of wine, that they’re simply overanxious. They’re made to feel crazy,” Shrikhande says.
One of the main reasons is lack of education about chronic pelvic pain – and similar conditions – during medical school and residency. Insufficient education can lead to even a common condition being regarded as a “zebra,” according to Shrikhande. This is true for other conditions as well, such as fibromyalgia.
Myths and Facts About Pain
Pain similarly has no “objective” measurement technique, according to Metz.
“Yes, people are asked to report their pain on a 1-10 ‘pain scale,’ but it’s still very subjective. A level 1 or 2 pain to me might be different from a level 1 or 2 pain for you,” she says.
And a lot of myths abound, despite scientific evidence to the contrary – for example, that Black people have a higher pain threshold than white people – leading to their pain complaints being taken less seriously in medical settings, says Tina Sacks, PhD, an associate professor at the University of California-Berkeley’s School of Social Welfare.
Sacks, a social scientist who specializes in racial inequities in health, has written a book called Invisible Visits: Black Middle-Class Women in the American Healthcare System. She notes that pain in women is also more frequently underestimated and undertreated, compared to pain in their male counterparts.
Spencer says she’s been told by female athletes “that when they’ve sought treatment for an injury, they were told to go home and use ice or take ibuprofen, while their male counterparts with similar injuries were more aggressively treated.”
Sacks agrees. “There’s still some version of women being seen as ‘hysterical’ – and providers sometimes assume that the pain is a product of that ‘female hysteria.'”
According to Sacks, people with “intersectionality” – for example, people who are both Black and female – are even more vulnerable because both groups are taken less seriously when they complain about medical symptoms such as pain.
She notes that people with disabilities are among the most at risk for medical gaslighting.
“Ageism, sexism, and ableism go hand-in-hand in the medical field, and these factors sometimes work together to effectively minimize or even negate altogether what the person is experiencing,” Sacks says, noting that immigrants are often taken less seriously as well.
Signs of Medical Gaslighting
“Unaddressed pain – or, for that matter, the downplaying or denial of any symptoms you’re describing – is a red flag,” says Spencer. And “be concerned if your questions aren’t being answered or are rerouted.”
The experts point to phrases that can be “warning bells” of gaslighting:
- “It’s all in your head.”
- “Your pain is manageable.”
- “You’re just tense.”
- “You’re too young to be feeling – ”
- “You’ve got to expect this as you age.”
- “All you need to do is lose some weight.”
- “It’s just your depression.”
Spencer notes that providers don’t always agree with their patients’ proposed plans of action, but that doesn’t necessarily equate to gaslighting.
“A doctor may not want to perform a specific test you think you need or may believe your hypothesis is incorrect, but he or she should at least take your concerns seriously and explain why the test or treatment isn’t appropriate,” she says.
When you leave a provider’s office, you should feel respected and validated. Feeling disrespected, trivialized, downplayed, or invalidated is another warning sign.
Protecting Yourself from Medical Gaslighting
Spencer recommends bringing a trusted friend or family member to medical appointments – especially someone who has been with you when you’ve had your symptoms.
“It’s harder to dismiss two people than it is to dismiss one person, and your ‘buddy’ can advocate for you,” she says.
Keeping a diary of your symptoms and writing down all of your questions in advance can also be helpful, Spencer advises.
“You can say, ‘I kept a record of my symptoms, and I know my body. What I’m experiencing isn’t normal for me,'” Having a written list of questions not only helps with remembering your concerns but also conveys a sense of organization and thoughtful planning that make it harder for a provider to brush you off.
Metz recommends returning to questions on your list that you feel were not taken seriously enough.
For example, this can look like, “I want to go back to something I mentioned earlier. Why do you think I’m having pain in the middle of my cycle?”
It might also be helpful to take notes on what the provider is saying, says Marshall. You’re less likely to be told to “get your nails done” if the provider knows everything is being written down.
Obadiah records medical appointments. Not only does this make the doctor more accountable, but it’s easier for him to remember what the doctor said.
But remember that there are laws in certain states prohibiting recording without the other person’s knowledge or permission, Metz warns, so don’t record unless you’ve asked the doctor if it’s OK to do so.
And, if at all possible, ask to have your conversation with the doctor when you are dressed rather than when you’re sitting in the examining table in a skimpy hospital gown, Sacks advises.
There’s already a power differential between a patient and a doctor, and you feel much more vulnerable when the other person is dressed and you’re half-naked.”
Finally, “if you continue to feel uncomfortable, seek another opinion,” Spencer suggests. Sometimes the health care system can be intimidating, and if you don’t feel well, you may not want to go through the hassle of finding a new provider. But it’s important not to allow the provider’s dismissive attitude to deter you from getting to the bottom of whatever is going on with your health.
Support groups can be helpful. Marshall has joined communities of people with fibromyalgia, who have provided validation, support, resources, and practical information. And support groups can also help you find a professional who’s specialized in your particular condition, Shrikhande notes.