For some women who experience serious and chronic physical or mental health conditions, one of their most daunting challenges is obtaining the belief and validation of health care providers, family members, and friends, researchers found in a recent study.
Those in the study described prolonged struggles to obtain emotional support, diagnosis, and treatment for a variety of serious, often-painful health conditions – including cancer, endometriosis, multiple sclerosis, and Crohn’s disease, as well as mental illnesses such as depression and anxiety that were exacerbated by others’ negative reactions, said Charee M. Thompson, the first author of the study and a professor of Communication at the University of Illinois Urbana-Champaign.
“Most women we talked to had lived with their health issues and pain for years,” she said. Thompson and her co-authors – University of Illinois graduate students Sara Babu and Shana Makos – interviewed 36 women from across the U.S. about their experiences with providers not taking their health concerns seriously and regarding the mental and physical toll it took.
“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.”
Although the study population of 36 was small, the researchers argue that their qualitative interview approach was “robust” enough to draw conclusions about the bias this group of women have experienced. “What we’re documenting reveals problems that have existed for centuries. “We also find documentation in what has been circulating in popular culture, in online narratives, and in research.” Thompson’s team called these negative responses to participants’ health disclosures “communicative disenfranchisement” – a process that denies individuals’ knowledge of their health and bodies, and treats their symptoms, experiences, and intersecting identities such as race and sexual orientation as nonexistent, imaginary, or worthless.
Also known as medical gaslighting, communicative disenfranchisement “is an isolating, painful and humiliating experience that is sustained by talk from physicians and others that’s often intertwined with economic factors such as insurance status and transportation,” Thompson explained.
University of Connecticut Communication professor Elizabeth Hintz developed the theory of communicative disenfranchisement while studying the experiences of patients with multiple pain syndromes.
Ranging in age from 21-70, most participants in Thompson’s study were White. Six of the women were Black, and the remaining three were Filipina, Hispanic, or Middle Eastern. However, eight of the participants said they were multiracial. When these women’s concerns were invalidated by their health care providers, they attributed their clinicians’ discrediting them to their race and economic or insurance status, according to the study.
Those women whose mental health or reproductive health problems began during childhood or adolescence said their parents’ skepticism about their health problems, their family’s conservative values or lack of economic resources prevented them from obtaining the health care they needed until they became adults or entered college. Study participants recounted experiences with clinicians who shamed or scolded them for their physical and mental health issues, made humiliating remarks about their bodies and weight, and attributed their health issues to “poor self-management and a personal failure to be doctorable – to present problems in ways that are worthy of medical care and attention,” the team wrote.
Many patients’ stories resembled “chaos narratives” where their well-being was negatively affected rather than improved by their interactions with providers. Each patient in the study told the team she saw several physicians before locating someone who listened to her concerns, engaged in mutual decision-making, and helped her search for answers.
“Reeling from dismissal, women often disengaged from health care while simultaneously questioning themselves and trying to self-manage their symptoms,” the researchers wrote. “Isolated, women wondered if their symptoms were real, worthy of attention and care, and whether receiving this kind of treatment from providers was normal.”
Feeling dehumanized and traumatized, these patients grieved for the years and life experiences such as motherhood and careers lost to poor health, the team found. However, as they developed confidence in their self-knowledge and found their voices, many women were motivated by these injustices to advocate for others in their families or their community.
“I really admired these women for their strength and resilience,” Thompson said. During the 18th and 19th centuries, women’s health complaints were often diagnosed as “hysteria” – a controversial mental health disorder and catchall diagnosis that physicians attributed to females’ supposed fragile, highly emotional nature, according to various researchers who explored the topic.
While hysteria was removed from the American Psychiatric Association’s Diagnostic and Statistical Manual for Mental Disorders in 1980, Thompson said “we now have coded, gendered language such as psychosomatic and somatoform disorders – where emotional distress triggers physical issues – that’s used when there’s no medical explanation for patients’ symptoms.”
Time to Heal: Women and Their Health
By Charee M. Thompson, Ph.D.
Communication professor Charee Thompson, right, and graduate student Sara Babu co-wrote the study. (Photo by Fred Zwicky.)
Implicit bias harms women and their health. It has for centuries. What’s more, women’s experiences with being dismissed and having to work to be believed start early in life—often as adolescents—and include family members and romantic partners as well as medical providers. Many women in our study talked about lost years of good health and the unnecessary pain they endured, in addition to experiencing personal and professional losses.
So, what can be done to mitigate these biases in women’s health? I am hopeful that with research, teaching, and a multilayered Communication approach, there can be positive and lifesaving change. It can start today, with you.
Advocate for the women in your life. Educate yourself about women’s health issues, offer to accompany women to medical appointments or any interaction in which they need support being taken seriously for their health issues, and default to compassion and support rather than disbelief and skepticism when women share their health concerns with you.
What educators can do in the classroom. As educators we can draw attention to health care disparities driven by biases that affect women and women of various intersecting identities, as well as anyone who identifies with a minority and marginalized community. In my classes, I shine a spotlight on the history of women’s health in the United States, noting how our words like “hysteria” are imbued with history, and just how recent efforts are to rectify years of research neglect on women’s health thanks to National Institutes of Health and other organizations.
As a scholar of interpersonal health communication, I also stress in my teaching the importance of messages in relationships. As my research shows, our attempts to gloss over a stressful health situation can be dismissive (e.g., “It’s nothing to worry about.”), and our questions can be accusatory (e.g., “Have you been to a doctor yet?”).
Improve training for physicians and healthcare providers. In health care, we can improve implicit bias trainings and go beyond recognizing bias and its adjacent concepts (e.g., stereotypes and various -isms). That includes educating health care providers about women’s health and education on cultural values and beliefs that matter to women and their health. We also need to go beyond knowledge acquisition and teach providers Communication skills that center culture and empowerment, for instance, how to listen to women, ask them questions, show respect of their unique perspectives, and engage in shared decision making across difference.
With new funding, my colleagues and I are developing a virtual reality-based training for physicians that aims to “heal health care disparities.” In the training, physicians will learn about implicit bias and its effects on the patient and the relationship; explore their own biases and to manage them; and practice Communication skills. Initial Communication training is centered on Black maternal health, with plans for future sessions tailored to other marginalized patient groups.
We should approach women’s health care with an ethos of humility over competence, a lifelong process of reflection and improvement rather than simply checking boxes for education and skills “mastered.”
Charee M. Thompson is an Associate Professor of Communication at the University of Illinois, Urbana-Champaign.