Hsu - SSM

SSM - Mental Health 5 (2024) 100291 Contents lists available at ScienceDirect SSM - Mental Health journal homepage: www.journals.elsevier.com/ssm-mental-health The imperative of lived experience for ME/CFS and long COVID research: What to make of patient stories (Lecture delivered at the National Institute of Health ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID meeting) Philosopher Elaine Scarry writes, “To have pain is to have certainty; to hear about pain is to have doubt” (Scarry, 1985, p. 13). This is the wild part about living with a poorly understood illness. You wake every day to the certain dread of suffering while struggling to prove it to others– while medical authorities spend time, energy, and money trying to confirm what you already know to be true. I am speaking to you as a person with ME, which collided with COVID-19 and long COVID last year. I am also speaking to you as a researcher. I’m a professor at the University of Texas at Austin, where I study the political and embodied impact of storytelling—the ways that narratives shape policy, social norms, and personal and public health. And we tell stories everywhere—through news media, political briefings, and scientific studies. More recently, I’ve focused on how discriminatory stories infiltrate medical research, and how that research gets taken up to do further damage. Almost exactly a year ago, The New Republic’s Natalie Shure published a notoriously dismissive article titled “We Might Have Long COVID All Wrong.” It opens with the story of a woman with functional neurological disorder, which was misdiagnosed as degenerative dementia. She miraculously recovers by retraining her thinking. Shure does not directly accuse long COVID of being psychosomatic. Instead, she cites an NIH study that found increased risk for long COVID among “women and those with a history of anxiety disorder.” She explains, anxiety frequently causes “symptoms most people would describe as physical.” By layering these stories atop one another, she’s building an argument: anxiety is misdiagnosed as biomedical illness; long COVID is commonly associated with anxiety; anxiety can be cured with therapy. This is a narrow selection of information that suggests a conclusion—that ME and long COVID could be effectively treated with psychological approaches. Shure’s article closes with the woman’s psychiatric rehabilitation, which involved stress management and habit building. Of course, media write-ups lack the nuance of scientific literature, but Shure’s framing parallels that of the study, which identifies female gender and anxiety and depression as risk factors for long COVID. Quite frankly, it doesn’t matter whether Shure or any of the researchers whose studies support her argument believe that long COVID is “all in one’s head.” Their arguments enter a cultural context where disabled people are already treated with suspicion, and where psychiatric diagnoses are already weaponized to invalidate a person’s selfknowledge. Let me be clear: whether or not you actually believe a discriminatory narrative, your words can endorse it– with all the authority of your position. Stories are algorithmic—they provide a set of rules for answering a question. When we see a Marvel movie, we expect flashy action sequences. When we see romantic comedies, we anticipate happily-everafters. When we encounter a patient with anxiety, we prescribe psychotherapy and maybe exercise and SSRIs. Like the algorithms that generate our social media feeds and our Google search results, stories can discriminate. Throughout Western medicine, the story of “hysteria”—which lives on in diagnoses of functional neurological disorder– has presumed that women are unreliable narrators of their own bodies. I don’t need to tell most folks in this room that this is the story that has haunted ME, as well as conditions such as asthma, endometriosis, and multiple sclerosis. This is the story invoked when medical experts—when the nation’s leading health authority—decides to ask, “Is anxiety a risk factor for Long COVID?” Rather than asking, what common factors might make particular people more vulnerable to anxiety and long COVID? What forms of treatment are already available for the physiological symptoms we’ve found in ME and long COVID—and what might we investigate to improve patient outcomes and quality of life? ME has been named for over a half century. If traditional methods for addressing anxiety and depression were tenable solutions, we would be overrun with miraculous recovery stories. We’re not. But this story remains persuasive because it feeds on existing stereotypes about women, about disability, and about whose pain deserves to be taken seriously. Let me try a different story. I get sick at nineteen years old. I spend weeks in bed, sampling all the soups that Houston has to offer. Because it takes too long for me to get better, I totter to my job on my university campus. I digitize VHS tapes while sipping the Powerade my girlfriend delivers halfway through my shift. I do this over and over again in the coming years—choose work over the cry of my body. After the girlfriend and I break up, after my friends stop asking me to come out, after I stop talking to my parents because they suspect I am faking my pain, because they are relieved when the girlfriend and I break up, because they and I have all been looking for an excuse throughout my queer life anyway. I go to work because I need the money. Because I have been taught that my value lies in my ability to outwork. That I can break myself for what others will not. I wonder if this is what resigned me to a lifetime of illness—and how much of this is my fault. How as a not-yet-out trans person of color I became so practiced in hating my body, in wishing it away, that I might have presumed it should hurt this bad. But, just as I absorbed the stories that expect my pain, so too have my physicians. So too have entire scientific disciplines that almost never think to ask about the general health needs of trans people (Reisner et al., 2016; Safer, 2021), or about the health inequities experienced by Asian Americans (Kim et al., 2021; Yi et al., 2021). So too have the https://doi.org/10.1016/j.ssmmh.2023.100291 Received 12 December 2023; Accepted 12 December 2023 Available online 27 December 2023 2666-5603/Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). V.J. Hsu SSM - Mental Health 5 (2024) 100291 institutions that have been content to let people with ME and long COVID disappear from public life. In 2020, I finally learn what I have as ME. I learn that in the intervening years that I spent trying to prove my value in a world where trans and disabled and Black and brown lives are presumed disposable; in the years when every doctor I saw insisted I was fine and could push through—I may have irreversibly worsened my disease. I watch, from the bed where I spend hours of each day fighting to sit up, a viral pandemic storm across the country while the US President blames people who look like me for the outpouring of suffering. By the time there is data on long COVID, it confirms what I already know—what ME patient activists had already been screaming from their sickbeds: that many people with COVID-19 will find that some symptoms—sometimes many symptoms, sometimes devastating new life limitations–have come to stay. By the time “post-exertional malaise” is a term my physicians recognize, it is a certainty my body has held for years. It is a pitfall I have run headlong into over and over again, under the reassurance that talktherapy and graded exercise would carry me to freedom. By the time you are listening to me speak, I have been sick for all of my adulthood. I turned thirty-five this year and am recognizing that I am going to age into this disease; that I may never again feel any better than I do right now, standing in front of you with my dizzy thoughts and aching body. But this is not just my story. This is a story of medical neglect, well documented in Jen Brea’s Unrest (Brea, 2017) and Ryan Pryor’s The Forgotten Plague (Castillo et al., 2015). It is a story about medical racism and misogyny, better described by Black women activists including Wilhelmina Jenkins, Margot Gage, Ashanti Daniel, and Chimére Smith Sweeney. This is a story of the hostility that erodes trans and queer lives, which folks such as JD Davids, Gabriel San Emeterio, and Terri Wilder have combatted throughout their careers. In this way, ME and long COVID are not exceptional. They belong to a litany of medical complicities that includes not only hysteria, but also schizophrenia, a diagnosis that was used to institutionalize Black civil rights activists. Chinese migrants were exiled through accusations of smallpox, syphilis, and plague– a strategy repeated with COVID-19. And trans and queer communities– particularly communities of color– were devastated by governmental and social responses to HIV/AIDS. This is a story we’ve been screaming for centuries, across generations. In recent years, ME research has seen significant progress. However, this progress is little comfort for people who’ve lived with ME for so long. What’s considered “progress” is often what we’ve already known–for example, when white researchers “discover” that people of color receive poorer treatment for complex chronic diseases. What’s considered “progress” is sometimes observational studies that literally quantify the knowledge of our bodies. What’s considered “progress” is someone else’s career advancement for naming our suffering. It is the same institutions that once neglected our diseases taking credit for identifying our pain. I am asking you to understand our stories as more than discrete anecdotes, but as points in a much larger constellation of knowledge—one that honors both peer-reviewed studies and the experiential wisdom of living a disease. I am speaking to you as both a patient and a researcher—as someone who has spent my career thinking about which communities are most impacted by my work and how I hold myself accountable to them. If “to have pain is to have certainty,” then to hear about pain is to be entrusted with someone else’s truth. What will you do with that trust? CRediT authorship contribution statement V. Jo Hsu: Conceptualization, Writing – original draft. Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper. References Brea, J. (Director), 2017. Unrest. Shella Films. Castillo, N., Prior, R., Directors), 2015. The Forgotten Plague: M.E. And the Future of Medicine. Electric Puzzle Productions. Kim, J.H.J., Lu, Q., Stanton, A.L., 2021. Overcoming constraints of the model minority stereotype to advance Asian American health. Am. Psychol. 76 (4), 611–626. https://doi.org/10.1037/amp0000799. Reisner, S.L., Poteat, T., Keatley, J., Cabral, M., Mothopeng, T., Dunham, E., Holland, C. E., Max, R., Baral, S.D., 2016. Global health burden and needs of transgender populations: a review. Lancet 388 (10042), 412–436. https://doi.org/10.1016/S01406736(16)00684-X. Safer, J.D., 2021. Research gaps in medical treatment of transgender/nonbinary people. J. Clin. Invest. 131 (4), e142029 https://doi.org/10.1172/JCI142029. Scarry, E., 1985. The Body in Pain: the Making and Unmaking of the World. Oxford University Press. Yi, S.S., Ðoàn, L.N., Choi, J.K., Wong, J.A., Russo, R., Chin, M., Islam, N.S., Taher, M., Wyatt, L., Chong, S.K., Trinh-Shevrin, C., Kwon, S.C., 2021. With no data, there’s no equity: addressing the lack of data on COVID-19 for asian american communities. eClinicalMedicine 41, 101165. https://doi.org/10.1016/j.eclinm.2021.101165. V. Jo Hsu Department of Rhetoric and Writing, Center for Asian American Studies, LGBTQ Studies, University of Texas at Austin, United States E-mail address: [email protected]. Handling Editor: Dr E Mendenhall 2