When the COVID-19 outbreak became a pandemic in March 2020, historians and journalists alike drew comparisons between the influenza pandemic of 1918–1919 and coronavirus. Considered the “deadliest event in human history,” the 1918-1919 influenza pandemic killed at least 50 million people worldwide. Gina Kolata, New York Times reporter and author of Flu: The Story Of The Great Influenza Pandemic of 1918, stresses in her reporting that while 1918 and 2020 have fear, masks, and prohibitions on public gatherings in common, “the medical reality is quite different” today from the pandemic 100 years ago. Ultimately, one can turn to more than pandemic history alone to learn possible perspectives and strategies for navigating our current health crisis. 

As an immunocompromised individual with a chronic condition negotiating conflicting messages about mask-wearing, economic priorities, and disparate understandings of risk, I actually find myself turning to recent American women’s history, rather than 1918, to help me find my bearings. Studying the patients, practitioners, health activists, and caregivers of the past can help us contextualize the coronavirus pandemic, not because their experiences are precisely parallel to ours, but because such histories offer vital insights about the nature of American medicine and who shapes it. Revisiting the history of the women’s health movement, with its attention to health politics, health inequities, and the power of the patient to influence health care, has offered me solace as well as practical strategies to navigate this year’s drastic turns. 

Evolving out of second wave feminism in the 1960s and much earlier reform causes, the women’s health movement called for an end to medical misogyny. The movement demanded women be taken seriously, not only as recipients of care, but also as medical practitioners and health reformers. Health education and health literacy were central to the movement as manuals like Our Bodies, Ourselves helped women “demystify” their own bodies and encouraged them to redefine health care as informed, proactive patients and advocates. Prevalent among the movement’s founders and activists, Jewish women like Barbara Seaman, Phyllis Chesler, Pauline Bart, and many members of the Boston Women’s Health Book Collective (authors of Our Bodies, Ourselves) helped shape the rhetoric and strategies of the cause. As the movement grew in the 1970s and 1980s, women of color like Byllye Avery and Dr. Helen Rodriguez-Trias and organizations such as the National Black Women’s Health Project (now known as the Black Women’s Health Imperative) helped expand the definition of women’s health activism to include and directly address issues of racism, poverty, and violence.

When I feel a sense of powerlessness as someone in a higher risk category, I consider feminist health activists’ extensive writings about the power of pursuing, accessing, and sharing health information. The authors of Our Bodies, Ourselves wrote of the liberating experience of learning about their bodies from their own research, both from medical sources and from one another. Other activists recounted the pursuit of health information in journalistic accounts and investigative studies, often relating to their own specific health struggles. In 1975, journalist Rose Kushner recalled her experience desperately seeking information on breast cancer after discovering a small lump near her nipple. “With appointments scheduled, a glimmer of plans made, books to read, at least I had my forefinger in my own destiny,” she wrote in Breast Cancer: A Personal History and an Investigative Report. Information, the accessibility of it as well as the content, veracity, and tone, is central to how we navigate illness and come to understand patienthood as much more than a passive and powerless state.

This year, my interest in the history of women’s activism translated into strategies for adapting to quarantine and pandemic health politics. Infuriated and dumbfounded by the White House’s pandemic response, I developed different approaches for learning more about COVID-19 and what I could do to protect myself and my community. I turned to the CDC, WHO, the New England Journal of Medicine, and free, full-text medical journal articles provided through the Public Health Emergency COVID-19 Initiative, which is supported by the US National Institutes of Health's National Library of Medicine. I may not understand every aspect of the science in these studies, but blending these sources together helped me feel less adrift and afraid.

The authors of Our Bodies, Ourselves wrote in 1973, “Our bodies are the physical bases from which we move out into the world; ignorance, uncertainty—even, at worse, shame—about our physical selves create in us an alienation from ourselves that keeps us from being the whole people that we could be.” The pandemic has undoubtedly changed how I embrace this physical base that shapes my daily life. It reshaped how I communicate with my doctors, how I manage my condition, and how I represent myself to coworkers and friends. It compelled me to become much more explicit about my condition, including my medical and financial vulnerabilities, as I sought to explain to even close family members why masks matter and how coronavirus was real, dangerous, and closer than they probably knew. In the past, I doubted that anyone wanted to hear about my chronic illness and all that entails. Since the coronavirus outbreak, I have felt bound to share more about what it is like to be immunosuppressed because people need to hear about it even if they don’t want to hear about it. And, honestly, I need to say it.

In May, Harvard Global Health Institute fellow Olga Jonas emphasized that, despite its immense scale, the 1918–1919 flu pandemic was forgotten and quickly faded from political discourse. From the vantage point of late 2020, forgetfulness seems almost unimaginable as we reach a quarter of a million COVID-19 deaths (and counting) in the United States alone. I hope that being more forthright about my struggles with an autoimmune disease and fears of coronavirus exposure will make some difference, albeit small when compared to the sacrifices we see every day from the nation’s essential workers and medical professionals. As the deeply personal narratives written by feminist health activists decades ago show, there is power in sharing our health battles, disappointments, and triumphs. In the early weeks of 2020, as I mapped out my plan for completing my dissertation on Jewish activists of the women’s health movement, I never imagined that this work would underscore how I experienced an evolving and increasingly dire health landscape. 

Looking to the history of medicine—whether of past pandemics, women’s health activism, or other movements for social justice in health care—can help us develop strategies for action and agency alongside new perspectives on ourselves, our times, and our own bodies. Individual narratives of this time will come from a wide range of personal essays and videos as well as countless tweets, news stories, and even TikToks posted by patients and hospital staff. Together, personal stories of the coronavirus pandemic can fortify the memory of this moment against historical forgetting. Perhaps such accounts can push back against the eventual impulse to jump forward from the tragedies of the pandemic without fully reckoning with how it all came to be or remembering how it felt.