It’s all in your head: Medical gaslighting a common problem for women, including those with Lyme, study finds

Many Canadian women who are dealing with chronic conditions, including  Lyme, say health professionals often minimize or deny their problems and don’t listen to their complaints, according to an ongoing study.

Researchers at the University of Windsor have been gathering information from respondents since late 2024 and have compiled close to 2,000 responses from women who say medical personnel have not taken their problems seriously.

Kendall Soucie, an associate professor of psychology at the University of Windsor, and Marissa Rakus, a doctoral student, say they first saw the pattern over several years of studying women’s health problems, specifically polycystic ovary syndrome (PCOS) and the challenges patients have getting it properly diagnosed. 

“Instances of being dismissed, or invalidated, not taken seriously, not believed by their provider,” Rakus said during an interview on March 17.

“Participants weren’t necessarily labelling it as medical gaslighting, but these experiences were coming up. So we decided to start a study just to get some preliminary data,” she added.

Lyme coming up a lot in the data

Both Soucie and Rakus say they were shocked to get so many responses in such a short time. They say the problem is particularly prevalent in women’s reproductive health, in cases of chronic pain, and in conditions that are not widely known, poorly understood and hard to diagnose, with symptoms that mimic those of other illnesses. It’s a description that fits Lyme disease and chronic Lyme perfectly, and complicates the challenge posed by the disease as cases skyrocket in North America and Europe.

Rakus says references to Lyme are coming up a lot in the survey, with 36 responses mentioning issues with the condition so far. 

“It’s coming up through multiple responses so it’s definitely in there,” she added.

First-hand experience

Both Rakus and Soucie have had first-hand experience with problems getting health-care providers to take their medical problems seriously. Soucie says she herself has PCOS, and Rakus, who is 27, says she has been trying to get her pelvic pain symptoms properly diagnosed since her mid-teens.

“I still don’t have an answer to these problems after 11 years. But it has been … a cycle of, ‘This is just normal for your age as a girl, this is just normal for your periods, this is just normal pain.’”

She refers to these doctors’ attitudes as normalization of women’s pain and says the debilitating menstrual discomfort that plagues many girls and women, pain that keeps them in bed and away from school and work for days on end, is not normal.

She says she’s also had chronic pain in her spine that doctors have told her is due to her anxiety getting worse and that she should just deal with that through her therapist.

“I’ve literally had a doctor say that it’s ‘all in your head.’ Later on, I found out that I had an issue with the discs in my neck.”

Many women doubt their own reality

Soucie says women tell similar stories throughout the survey data. She says many respondents have spent so many years trying to get medical professionals to take their problems seriously that they begin to doubt their own reality and feel they’ll never get a resolution.

“They’re seeing multiple specialists and multiple providers and spending decades of their lives trying to seek an answer and seek care,” she said.

“It’s this long, drawn-out process of dealing with symptoms, being told that they’re not connected to anything biomedical so they must be psychological, must be just stress, anxiety, whatever,” Soucie added.

“It shouldn’t take 10 years to reach a diagnosis. That shouldn’t happen.”

The problem is systemic, researchers say

The researchers say there are many reasons why medical gaslighting disproportionately affects women and that most of them have more to do with systemic problems within the medical profession than with individual practitioners.

“It’s not necessarily them being jerks,” Rakus said, adding that the big problems she’s been seeing in her research are lack of education and lack of knowledge about women’s health problems.

“The medical system itself has been built on the perspectives of male anatomy,” she said.

“Women weren’t even included in medical studies until the 1990s and still, to this day, there is a lack of funding and research on women’s reproductive health, just women’s health in general,” Rakus added.

She says long-held and stubborn myths about women also contribute to the problem.

“Since the 1800s, it goes back so far, women being diagnosed with hysteria. So, they’d present these physical symptoms but it’s just, ‘You’re hysteric, you’re being overly emotional, you’re dramatic,’” Rakus said, adding that there’s still a “lack of trust in what women are experiencing.”

Researchers want a larger audience

So far, there has been little reaction from the medical profession to the study, Soucie says, but she expects that to change once the research wraps up in April and she and Rakus begin making their findings public over the next year.

And since they see the study as not only academic inquiry but also a service to the community and a way to help make lives better, they won’t limit themselves to the traditional ways of publishing scientific research, 

“We’re thinking about podcasts and interviews and journalism and other ways to get the word out,” such as infographics online and documentaries, she said.

“We’re thinking about ways to reach a larger audience than just the academic sphere.”