Doing Harm: How The Remnants of “Hysteria” Impact Chronically Ill People

EDITOR’S NOTE: We want to acknowledge that, like many societal institutions, scientific and historical research often leaves trans, non-binary, and gender non-conforming people out, erasing our identities and disparities. As a result, though attempts have been made to use language that is as inclusive as possible, articles and essays like the one below are often forced to use language that is limiting to accurately convey the available data as it has been published (whether historical or present-day). But our commitment to highlighting and uplifting trans, non-binary, and gender conforming people and their work remains.

The word “hysteria” inherently evokes misogyny. Deriving from the Greek word for “uterus,” it was used in ancient Greece as a diagnostic label for women with symptoms ranging from dizziness to paralysis and menstrual pain—all of which were attributed to a “wandering womb.” Throughout history, the label was given to women who were perceived as unreasonably ambitious, attention-seeking, neurotic, or sexually dissatisfied. In Freudian times, it eventually evolved to refer to a mental disorder thought to primarily affect women, causing physical manifestations.

In an age of medical advancement and greater attention to gender equity, most of us would consider this gendered catch-all diagnosis for unexplained ailments to be unthinkable. But chronically ill people of marginalized gender identities, and just about anyone with a chronic health condition that disproportionately affects women, can attest that modern medicine hasn’t progressed as far beyond the hysteria diagnosis as one might expect.

I’ve crossed paths with countless people whose disabling physical symptoms were initially attributed to a variety of psychological explanations— from anxiety to repressed trauma. Many were given diagnostic labels that were essentially equivalent to hysteria by a different name, before years later receiving correct diagnoses of chronic illnesses that disproportionately affect women, like endometriosis or postural orthostatic tachycardia syndrome (POTS). 

I, myself, can vividly recall sitting in a doctor’s office exam room at 14 years old, desperately hoping that this visit would be the one to finally provide an explanation for my severe abdominal pain that had suddenly begun months prior and never dissipated. Instead, the gastroenterologist declined to order any tests, impatiently telling my mother that anxiety is common in teenage girls and recommending psychiatric medication.

As my health declined further in early adulthood, I learned that chronic illnesses like myalgic encephalomyelitis (ME), a neuroimmune disease that mostly impacts women, have been especially plagued by these stigmas, and people with ME are still forcibly institutionalized in psychiatric facilities around the world. As the COVID-19 pandemic has brought similar infection-triggered chronic illness experiences into mainstream public discourse, it’s been disturbing to witness some healthcare professionals speculate that Long COVID is a form of “mass hysteria,” despite an abundance of scientific evidence to the contrary.

These mislabellings are harmful, not because there is anything shameful about the possibility that someone could be living with a psychological condition. Rather, what is shameful is that women and other people of marginalized gender identities are still treated as unreliable reporters on our own bodies. It is harmful because this gendered misdiagnosis obstructs access to necessary medical care, disincentivizes biomedical research on certain diseases, and even prevents us from seeking support for comorbid mental health symptoms out of concern that doing so could further damage our credibility. 

In her book Doing Harm, Maya Dusenbery explores the self-perpetuating cycle of bias and scientific neglect that keeps us stuck in the dark ages of gendered medical gaslighting: “Women’s symptoms are not taken as seriously because medicine doesn’t know as much about their bodies and health problems. And medicine doesn’t know as much about their bodies and health problems because it doesn’t take their symptoms seriously.”

In order to truly leave the days of the hysteria diagnosis behind, we need to address what Dusenberry refers to as the “knowledge gap” and the “trust gap.” We need more research and medical education on conditions that disproportionately affect women. And, we need a radical deconstruction of the gender biases in healthcare that perpetuate the dismissal of our pain.

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Anonymous (she/her) is a nonprofit professional and chronic illness advocate based in New England.