5. #TimeForUnrest

In this chapter, I take up the multiple temporalities of a specific chronic disabling condition—myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)—through an analysis of ME/CFS experiences and events as documented in Jennifer Brea’s film Unrest (2017)1 and on social media via ME/CFS-related hashtags. Brea’s film shows illness and illness politics as operating biopychosocially across different spaces and temporalities, including on social media, which becomes a site of a kind of embodied assembly where people gather while remaining at home and in their own beds. In her book on precarity and public assembly, Notes Toward a Performative Theory of Assembly, Judith Butler explores the “question of whether the destitute are outside of politics and power or are in fact living out a political agency and resistance that expose the policing of boundaries of the sphere of appearance itself.”2 I also explore this question of how those deemed outside the limits of the political—in this case the sick and bedbound—nonetheless, as Butler posits, “break into the sphere of appearance as from the outside, as its outside, confounding the distinction between inside and outside.”3 Brea’s film and related hashtags on social media create the conditions of possibility of this breakthrough into the sphere of appearance, despite how, or perhaps because, such action exhausts—literally, in the case of ME/CFS—any one individual’s capacity to appear.

Brea’s film presents what I call the historical persistence of hysteria, a diagnostic category replaced by conversion disorder, but nonetheless haunting the phenomenological experience of illnesses, like ME/CFS, without (yet) known biological causes. At the same time, the film also attempts to capture the experience of embodiment as a kind of endurance, as extreme fatigue and sensitivity to light, sound, and surroundings makes ME/CFS a condition of unrest—a disturbed and uneasy state that is at once physical, social, and political. Early in the film, as Brea films herself with her phone struggling to crawl across the floor to her bed, she anticipates a question that might be on the viewer’s mind: “Why would I film it?” Her answers—“Because I think someone should see this” and “I didn’t know what else to do so I just kept filming”—suggest both a politics of visibility and a politics of endurance, or the politics of making endurance visible through practices of documenting illness and illness politics that connects to other historical and contemporary examples of illness and disability in action, including, importantly, to the emergent illness of long Covid in the present, which I will touch on in this chapter and discuss in more detail in my conclusion.

As with #CripTheVote, Brea, her film, and the hashtags #TimeForUnrest and #MillionsMissing, among others, challenge in important ways what activism and the figure of the activist look like. By connecting with people with ME/CFS online, Brea not only documents their experiences with ME/CFS but also seeks to politicize the lack of participation of people with ME/CFS whom she describes as missing in action from society and the public sphere. With the film and hashtags, Brea demonstrates illness (in)action as a kind of unrest cure. I conclude this chapter by discussing the recent protest in September 2022 organized by the #MEAction Network that took place in front of the White House and on social media to draw attention to the continued underfunding of research on ME/CFS, despite increased interest in understanding the long-term impact of viral infections with the emergence and widespread experiences of long Covid. My goal in highlighting this recent demonstration of illness politics is itself meant as a form of illness politics, as is this book itself—that is, as participating in, by amplifying and extending, a “struggle for an egalitarian social and political order in which a livable interdependency becomes possible,” as Butler calls for in her lecture on “Bodies in Alliance and the Politics of the Street.”4

Hysteria as Ur-Illness Performative

Brea presents her own experience of illness as personally, phenomenologically, and politically confounding. Clips from home movies show an active little girl and more recent film footage and still photographs give a glimpse of an adventurous young woman always on the move and determined, as she puts it, to “swallow the world whole.” This visibly active life ends when Brea is twenty-eight. While working on her doctorate at Harvard, she gets sick with a very high fever and ends up bedridden. She is exhausted in a way she has never felt before, the side of her face becomes numb, sometimes she is unable to speak or think coherently, and she becomes sensitive to light and sounds. She sees “every kind of specialist,” but no one can say exactly what is wrong. Eventually, a neurologist diagnoses “conversion disorder,” speculating that the likely cause is either a distant trauma that she doesn’t fully remember or recent stress from preparing for doctoral exams. “Conversion disorder” is a new term for an old illness: hysteria. The term itself emerged in 1980 as part of the bio-scientizing, “evidence-based” impulse of the third edition of psychology’s Diagnostic and Statistical Manual (DSM-III) and is defined as a “psychoneurosis in which bodily symptoms (such as paralysis of the limbs) appear without physical basis.”5 With its ever-changing terminology and multitude of somatoforms, hysteria operates historically like the diagnosis itself: the category appears to suffer from conversion disorder, or put another way, we might say, diagnostically, hysteria is hysterical.

A short history of hysteria is at the center of Brea’s film, which presents the experience and event of hysteria as a slide show. A series of black-and-white, historical images of hysterics flash by, accompanied by a syncopated beat, the combination of image and sonic reverberation heightening the feeling of the persistence of hysteria as a repetition compulsion of a diagnostic category that is characterized by a certain photogenicity. Unrest’s historical hysterics are all women and Brea’s treatment of them suggests the importance of the still and moving photographic image in enacting hysteria across different times and spaces.

Hysteria has a long association with the female body and women. The symptoms and significations that concatenate around the sign of hysteria are multiple and mobile. Hysteria’s habit of mimicking other diseases makes hysteria not one disease but many if not all diseases, at least potentially. As I argued in chapter 3, illness and illness politics are performative, understood in the way Butler uses the term in relation to her theories of gender and precarity.6 These theories have been utilized to discern, importantly, the how not the what of gender, and I argue that they help us to analyze the how not the what of gender (along with race, class, sexuality) and illness together.7 Where illness is concerned, the utterance “you have _____ [choose any disease here]” doesn’t simply name an existing biological condition; it brings that condition into being. When certain conditions and procedures are met—the authority of a doctor making the diagnosis, conclusive lab work and test results—then a person can be said to be ill. When these conditions are not met, then the person often becomes mentally rather than physically ill.8

Hysteria as conversion disorder becomes a kind of ur-illness performative, as the default category that has persisted over time for illnesses not yet explained biologically. This repeated “not yet” helps explain, I think, hysteria’s persistent yet divergent and multiple enactments. Unrest’s syncopated slide show of hysteria visually captures hysteria as ur-illness performative. Although Brea refuses the diagnosis of conversion disorder for herself, she nonetheless links her experience to the history of hysteria and its visual somatoforms. Her desire to document her own and others’ experiences of ME/CFS is motivated by an understanding that the past isn’t so “strange and distant”—people, women mostly, are still being locked up in institutions or trapped in bedrooms they never leave because their illnesses are not treated as real. Brea believes we should know and do better now, but she comes to realize from her own experience of illness and from documenting illness—hers and others’, past and present—that “we’re still doing this,” still doing hysteria. This is what Ed Yong, reporting on Covid “long haulers,” calls the “long history of medical gaslighting,” in which a patient’s physical suffering is downplayed “as being all in their head, or caused by stress or anxiety.”9 I will return to the experience and event of long Covid in my conclusion to this chapter, as well as in the final chapter, and to work by activists and some scientists to make connections between the symptomatology of long Covid and ME/CFS as a form of illness politics that seeks to counteract medical gaslighting.

Finding a Phenomenological Vocabulary of Illness

Bedridden for several years and living in limbo without a conclusive diagnosis, Brea describes how her once wide world shrinks to one room. She begins to search online for possible clues to what has caused and what might treat her intractable condition. Her own research leads her to what she will discover is the still somewhat controversial diagnosis of ME/CFS and to a whole community of sufferers in the shadows of society. As Brea writes in her director’s statement, she “fell down this rabbit hole and discovered a hidden world of thousands of patients all around the globe, many of whom are homebound or confined to their beds and use the internet to connect with each other and the outside world.”10 Along with documenting her own experience of ME/CFS, Brea is determined to document the lives of others—some 17 million worldwide, the #MillionsMissing, as proclaimed by another hashtag generated by the film to highlight the problem of lack of visibility and research on the problem of ME/CFS.

The lack of visibility and research on ME/CFS is a result of the fact that doctors and scientists can’t find a biological cause and so doubt the realness of the illness except as a present-day form of hysteria, hence the conversion disorder diagnosis. In her book The Rejected Body, feminist philosopher Susan Wendell discusses how chronic illnesses and illnesses with unknown etiologies are a problem for medicine. Medicine tends to dismiss or deny the existence of what it cannot explain physiologically or treat successfully. Medicine has significant cognitive and social authority in contemporary society, affecting, Wendell argues, “how we experience our bodies and our selves, how our society describes our experiences and validates/invalidates them, how our society supports or fails to support our bodily sufferings and struggles, and what our culture knows about the human body.”11 Wendell’s interest in the philosophical importance of chronic illness and disability emerges out of her own experience with ME, which, as with Brea, came on suddenly and devastatingly in February 1985. Unlike Brea, Wendell is “very lucky” in relation to her doctors, who “recognized at once that something was seriously wrong,”12 and found evidence in blood tests that indicated a viral infection. She saw specialists in infectious disease and immunology and was first diagnosed with acute infectious mononucleosis, then chronic Epstein-Barr virus syndrome, before doctors finally arrived at the then newly emergent diagnosis ME. Wendell notes that the “history of my own illness has coincided with the gradual discovery of ME/CFIDS [chronic fatigue immune dysfunction syndrome] by the rest of the world.”13 She describes learning to live with chronic pain, muscle weakness, “profound fatigue (much more total and exhausting than any fatigue [she] experienced when healthy),” dizziness, depression, headaches, problems recalling words, etc.14

Wendell provides an especially astute critique of what she calls the able-bodied paradigm of humanity, which relies on an idealized view of the body as young, healthy, and always up to speed. Twenty years after the publication of Wendell’s incisive critique, Brea’s film documents the still significant difficulties people with ME/CFS have in finding validation for their phenomenological experiences of their bodies. Wendell offers insight here as well. She tells a story about how she came to realize she had to be cautious in how she described her symptoms when a specialist showed surprise when she used the vivid metaphor of being injected with strong poison to capture how she felt at the moments her illness relapsed. Very early in Unrest, as Brea and her husband Omar Wasow wait to see a doctor, they discuss a similar discursive tightrope: “if you say too little, they can’t help you,” Omar says. “If you say too much, they think you’re a mental patient.” Wendell argues that what medicine lacks is an effective vocabulary for the phenomenology of illness. She explains that patient-support groups are valuable in that they “offer a context in which people who are ill can work together to articulate their experiences of their bodies, to find or invent a phenomenological vocabulary that is adequate.” This is what Brea’s film and illness politics in general also does: find or invent a phenomenological vocabulary for illness, updating and extending Wendell’s support group by connecting to others online. And, as we are seeing in the present, the phenomenological vocabulary and online illness politics of ME/CFS provides a portal into the confounding experiences of long Covid, which shares many symptoms, including debilitating fatigue, with ME/CFS.

Brea’s description of her phenomenological experience of ME/CFS is remarkably like Wendell’s. Both discuss a “cellular exhaustion,” as Wendell puts it, or becoming less and less effective at the cellular level, as Brea says. Wendell anticipates the dismissive reactions to such a theory of cellular experience: “Certainly I do not experience my body as cellular, but I experience the exhaustion as so deep and pervasive that it feels as though something is wrong throughout my body on the cellular level.”15 Brea moves between scales, from questions about the metabolic crash point and how that feels—“when we crash we disappear”—to questions that after thirty years still need to be asked: “Why do more women get it? Is it genetic? Why thirty years later are we no closer to a cure?” For Brea, it is #TimeForUnrest, and her film and advocacy work operate across multiple temporalities and spaces to bring illness (in)action into the public.

The narrative arc of Brea’s film is from rest to unrest, from passivity to activity, and from private to public. Brea explains that what terrifies her is that “you can disappear because someone is telling the wrong story about you.” Thus, Unrest seeks to tell a truer story, but also to make visible the “millions missing” from public life. The film doesn’t end with triumph but with images of protest and a statement of endurance and repetition: “I am still here. I am still here.”

“Still Sick, Still Fighting”

As with my discussions of #ADAPTandRESIST and #CripTheVote, I want to end this chapter by showing how the struggle that Brea documents in her film continues in the present—or, as in a recent slogan created by ME/CFS activists, “still sick, still fighting.” Again, this is one of the key functions of hashtags: to expand and extend the parameters of an action beyond a particular space and time—into the present and the future. In September 2022, the #MEAction Network, which describes itself on its website as “igniting a global revolution in ME care,” organized a #MillionsMissing protest in front of the White House in Washington, D.C., and online. The goal of this protest was to “tell President Biden that the pandemic is not over, and that millions are being disabled with post-viral disease, including Long COVID and ME/CFS.”16 The protest was a demonstration of both illness and illness politics that I would argue, following Butler, brought “the material urgencies of the body into the square” and made “those needs central to the demands of politics.”17 In her series of lectures on the performativity of assembly, Butler is interested in moments “when precarious lives assemble on the street in forms of alliance that must struggle to achieve the space of appearance.”18 In the case of the #MillionsMissing protest, one form of alliance that was demonstrated was between people sick with ME/CFS and people sick with long Covid. As Ben HsuBorger, a person with ME/CFS and #MEAction advocacy director, explained about the protesters: “We are sick and disabled with ME/CFS and Long COVID but are here today, putting our bodies on the line” to send a clear message that “we need urgent action from our government.”19

#MEAction Network documented the protest with a livestream on Twitter that was watched by more than nine thousand viewers that day, and clips of which have since been uploaded to YouTube (Figure 5). Coverage on the #MEAction website emphasized the material urgencies of these bodies in public and an #MEAction press release documented the impact of the protest on the protesters’ bodies: “The protesters—most of them sick with ME/CFS and/or Long COVID—struggled to go on as their symptoms worsened with the exertion of chanting, walking and being in the heat. They will now spend days ‘crashed’ in bed with worsened symptoms attempting to recover from the hours they spent making their voices heard.”20 Other press coverage also highlighted the protest as a demonstration of illness in action. Zeynep Tufekci, opinion columnist and author of Twitter and Tear Gas, wrote about the protest for the New York Times in late October 2022 in a piece entitled “Protesters So Ill, They Couldn’t Get Arrested.”21

Protesters with ME/CFS lying in front of the White House with signs in September 2022. — Figure 5. Screen grab from video of the #MEAction Network protest at the White House on September 19, 2022. Protesters are lying on the sidewalk in front of the fence around the White House and holding up signs that say, for example, “URGENT ACTION NEEDED” and “STILL SICK, STILL FIGHTING.” Closed captioning says, “We’ve increased attention to ME through the media, lobbied. . . . ,” https://youtu.be/qnnb2CL0VKY.

Tufekci’s piece begins with a story about one of the protesters, Gabriel San Emeterio, who is HIV positive and has ME/CFS and who tells Tufekci that HIV “has been less onerous” than ME/CFS, which Tufekci calls “this more obscure affliction.”22 Tufekci then describes the protesters as giving “their best shot at civil disobedience” but adds that “instead of being arrested, they were largely ignored.”23 This narrative of a failed protest relies on the image of the heroic activist in the streets defying the police and the law to risk arrest and generate media attention for their cause. The aftermath for this #MillionsMissing protest in front of the White House was not disruption, arrest, and imprisonment. Rather, as Tufekci reports, the aftermath was the appearance of a symptom of the protesters’ conditions—post-exertional malaise (PEM), which is experienced by people with both ME/CFS and long Covid. Tufekci discusses how “PEM may be one reason ME/CFS, and even long Covid, has been dismissed so often as a serious condition by many doctors.”24 Tufekci discusses how a symptom like post-exertional malaise is stigmatized as a sign of an unwillingness to push through illness. She notes that this glorification of pushing through is part of an ableist culture of medicine, in which medical training normalizes pushing through exhaustion as part of the process of becoming a doctor. Thus, an antagonism can arise between doctors and those patients deemed not sick but malingering.

However, Tufekci’s coverage of the protest and its aftermath is key: as with the ADAPT activists on Capitol Hill, the protest becomes a spectacle of illness politics when the media covers it as such. Tufekci asks a question that has been central to my analysis of illness politics on social media: “How do you protest when the very act is a dire threat to what little ability you have left?”25 Yet, she makes the mistake of assuming that the only playbook to follow is the one “AIDS activists used years ago, escalating civil disobedience.”26 She then describes a cat-and-mouse game with police on the day of the protest, in which the police managed to direct traffic around protesters lying in the street and, in the end, the protesters’ failure to escalate as they became exhausted from their efforts to appear in public. Yet, I contend that, in the case of the #MillionsMissing protest, the spectacle is not civil disobedience and arrest but a less visible, yet no less powerful, form of embodied resistance—the willingness to make oneself sicker to draw attention to one’s illness and the politics surrounding it. In her analysis of hunger strikes in prisons, Butler argues that “bodily exposure can take different forms.”27 Her point that “sometimes deliberately exposing the body to possible harm is part of the very meaning of political resistance” is relevant in the case of the #MillionsMissing protest. The activists who participated in the protests at the White House and online demonstrated “what it means to mobilize vulnerability in concert.”28 In concert is not simply on the street but beyond it through the hashtag on social media that continues the mobilizing of vulnerability in concert, even as the activists return home and to their beds to recover from the exertion of their illness politics.

Ongoingness: #LongCOVID