How ‘Medical Gaslighting’ Affects Women With Chronic Illness: Study

Women with chronic health conditions like multiple sclerosis (MS) often experience disbelief and disenfranchisement from healthcare providers when they seek care, a new study highlights.

The study, “Women’s Experiences of Health-Related Communicative Disenfranchisement,” was published in Health Communication.

There is a long history of discrimination and disenfranchisement toward women in healthcare systems. For example, in the 18th and 19th centuries, women’s health concerns were often dismissed as “hysteria” — a catchall diagnosis blamed on women’s supposed fragile and emotional nature.

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36 women interviewed about their experiences with medical providers

A team of scientists conducted interviews with 36 women who reported that they had not being taken seriously about health issues by medical providers, friends, or family.

“Most women we talked to had lived with their health issues and pain for years,” Charee Thompson, PhD, a professor of communication at the University of Illinois Urbana-Champaign and co-author of the study, said in a university press release.

Most of the women had reproductive health problems such as endometriosis or mental health issues like anxiety and/or depression. One of the interviewees, identified by the pseudonym Karen, had MS.

“Most of them were in their 20s, 30s or older, and oftentimes their mental or reproductive health issues started when they were adolescents. We’re talking decades of neglect or undertreatment,” Thompson said. “One thing that was surprising and frankly heartbreaking was the personal rejection and sometimes the abuse that women experienced because of their health problems.”

The automatic response should be to believe women — before landing on a diagnosis or having confirmation bias, where you make a diagnosis and there’s nothing that moves you from it. To really listen to women means you do more listening than talking.

‘Medical gaslighting’ means being met with disbelief about your own health

The scientists’ goal was twofold: first, they wanted to amplify the voices of these women in the scientific and medical community’s discourse. Second, they wanted to analyze the women’s experiences with healthcare systems through the theory of communicative disenfranchisement (TCD), which is a framework published in 2021 for understanding the material impact of interpersonal interactions.

The theory centers on the idea of communicative disenfranchisement, which the researchers define as “the process by which individuals’ identities, relationships, and experiences are treated as not ‘real’ or of value.” It is “produced and sustained through disenfranchising talk that discredits, silences, and/or stereotypes one’s identity, relationships, and/or experiences.”

In medical settings, communicative disenfranchisement is sometimes called “medical gaslighting” — being met with disbelief about your own experience of your body and mind. TCD emphasizes the power imbalance inherent to these interactions, where the opinions of medical providers are often thought “more real” than the lived experiences of women.

“To our knowledge, this study is one of the first to apply TCD and demonstrates the validity and heuristic value of TCD as a framework for critiquing the status of women’s health care and forwarding avenues for positive change,” the researchers wrote.

The researchers highlighted how the women were often dismissed as “crazy” and made to feel shame or guilt about their medical issues.

“They love, love, love, love to go to the hysterical woman,” Karen said. “There’s a pattern where they get — I call it getting the cart before the horse. You know, they [say], ‘Oh, you’ve got depression, anxiety, and that’s why all this is happening.’ And I’m like, but I wouldn’t have depression and anxiety if I felt okay, if these things weren’t happening.”

The women described finding themselves in a vicious and paradoxical cycle where they would know something was wrong and seek help — only to be met with dismissal and disbelief, often leaving them feeling worse off than they had been before seeking medical attention. While most of the interviewees did eventually get a proper diagnosis and treatment, this often left a lasting sense of distrust toward medical providers.

“I don’t have any trust,” Karen said. “Why would I go and subject myself to all that … to have somebody sit there and go, ‘I don’t think so.’?”

Bad experiences with medical professionals can cause lasting physical and mental harm, and many of the women expressed feeling silenced at some point in their journeys. Nonetheless, the women also talked about going to lengths to advocate for themselves and ensure they are understood in interactions with providers.

“I think I want to set a tone from the very beginning,” one woman said. “It’s not that I’m a pain in the ass, it’s a, ‘Hey, I want you to know as a healthcare provider. I take my health seriously, so I may ask you additional questions or I’ll question a diagnosis or something.’ ”

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“I really admired these women for their strength and resilience,” Thompson said.

Taking all these findings together, the researchers propose steps for the medical field to improve care for women. First, they stressed that providers need to listen to women and believe what they say about their own experiences.