Ongoingness: #LongCOVID

Making Long Covid

In their article in Social Science and Medicine, Felicity Callard and Elisa Perego, both of whom identify as having long Covid, argue that “patients made long Covid.”6 They point to a long history of health activism and illness politics, including by mental health survivors, AIDS activists, people with chronic illnesses, and other patient advocates. They note as well that, despite this long history of patient activism, nonetheless “patient and lay contributions have often been ignored or underacknowledged by conventional actors, which has intensified patient suffering and societal inequalities.”7 Callard and Perego explicitly pinpoint social media as a key site for the making of long Covid by patient advocates. Indeed, they write, affirming my argument in this book about the importance of social media as a site for illness politics, “There are strong reasons to argue that Long Covid is the first illness to be made through patients finding one another on Twitter and other social media.”8 Callard and Perego provide an extensive genealogy of how the term “long Covid” emerged, noting that, as early as March 2020, people were describing a multiplicity of lingering symptoms, even in cases that were designated “mild” because the person was never hospitalized. In May 2020, as part of the online journal Somatosphere’s “Dispatches from the Pandemic” series, Callard had already taken on the diagnostically and phenomenologically imprecise category “mild” in relation to Covid-19.9 In tweeting the essay to her followers, Callard noted, following the emerging activist protocol of counting the days since one first developed symptoms for Covid, that she was on “Day 52” and that she was only able to write such a reflection on the days when her “own ‘mild’ #Covid19 symptoms have been manageable.”10

Citing science studies scholar Lorraine Daston’s work, Callard and Perego track how “long Covid” solidified into a “scientific object,” “even as its precise contours remain subject to debate.”11 They discuss how peer-reviewed scientific studies showing cardiological and neurological sequelae even in cases of “mild” Covid-19 began to circulate on social media with the hashtag #LongCOVID in July 2020. They wonder, writing in October 2020, whether long Covid will persist as a term or “break up into other classifications.”12 As I write over two years later, it is now clear that the term “long Covid” has persisted, in no small part thanks to the ever-growing number of patient advocates who, nonetheless, still find themselves up against dismissive and disbelieving doctors.13 Callard and Perego also discuss how racism, sexism, and ableism contribute to the dismissiveness and denialism surrounding patients’ experiences of long Covid. They acknowledge that “patients from marginalized/minoritized communities, many of whom are central to making Long Covid, have been denied platforms, and have decided not to place themselves in the spotlight to discuss a disease that compounds discrimination.”14 This returns us to a key aspect of illness politics—that it intersects with, and sometimes stands in for, racial, sexual, and class politics.

Medical Gaslighting: Cynthia Adinig’s Story

In his article in June 2020, Yong discusses long Covid in relation to a “long history of medical gaslighting.”15 He notes that this phenomenon is gendered and that women are “less likely to be perceived as credible witnesses to our own experiences,” as Vonny LeClerc, one of his interviewees, puts it.16 Yong adds that this is “especially common when women have subjective symptoms like pain or fatigue, as most long-haulers do.”17 Medical racism also plays a significant part in denying a patient’s epistemic authority about their experiences of their body and illness. Lindsey Sitz’s video documentary created for the Washington Post records and amplifies Cynthia Adinig’s story of long Covid and medical gaslighting, a story Adinig herself had first documented on social media as a means of connecting with others about their shared experiences of long Covid. Like Callard and Perego, Adinig has contributed to making long Covid, and she identifies herself on her website as a “long Covid patient and advocate” who recently gave testimony to Congress on the coronavirus crisis.18

The text included with the video on the Washington Post website summarizes Adinig’s harrowing story as follows:

Over the last eight months, 35-year-old Cynthia Adinig has been to the hospital upwards of 20 times for debilitating symptoms related to long-haul covid-19, ranging from heart palpitations to severe malnutrition. On some visits, Adinig feared for her life, but was pushed out of the hospital before she felt ready to leave. With few answers from doctors, Adinig turned to an online support group for connection and understanding.19

It is a familiar narrative of a confounding illness, dismissiveness and disbelief from doctors and other health practitioners, and eventually finding support from fellow sufferers on social media. It is also clearly a story of medical racism, as we witness Adinig filming her visits to the hospital on her phone and posting footage on Twitter of hospital staff neglecting her and hospital security forcing her to leave for supposedly being disruptive even as she is suffering and weak from “heart palpitations, low oxygen levels, dehydration, and severe malnutrition.”

Sitz’s film begins by showing Adinig on September 27, 2020, moving slowly outside her apartment building, as she assesses her current condition: “Feeling okay today. For now. It’s like an hour-by-hour kind of thing.” Adinig then describes how she, her husband, and their four-year-old son all got sick in March 2020. The voiceover explains, “It was a mild sickness—scratchy throat, no cough, low-grade fever,” and we learn from Adinig that they were never tested for Covid because of strict testing requirements at the time. Adinig, however, does not recover. Instead, she describes the onset of a persistent and debilitating condition, which arrived on Mother’s Day—March 10, 2020, after Adinig’s husband treated her to one of her favorite foods, shrimp. Along with interviews with Adinig and others, footage of her with her family, and film she took with her phone while at the hospital, the film also includes animated sequences created by animator Daron Taylor. Thus, as Adinig recalls her Mother’s Day treat and her experience after eating the shrimp, we see her cartoon avatar with her hands holding her stomach and chest, as she says, “I just started feeling weird.” As Adinig describes her symptoms (“Like, my jaw felt really tight, and my heart just felt like it was racing. My eyes got blurry.”), the animation visually captures the overwhelming, dizzying feeling of suddenly becoming sick. Jagged forms enter the film frame, invading Adinig’s cartoon avatar’s space as her figure wobbles and her clothing and skin coloring change from bright and healthy-looking to drab and washed-out variations of gray. A pale peach blob pulsates from her heart, ripples expanding outward, as the symptoms take over her body. The animation creates a visual reenactment of becoming sick—subjective symptoms of pain and bodily discomfort are rendered via what we might describe as a graphic phenomenological vocabulary of illness. Adinig’s symptoms are animated into a visual language that is disturbing yet relatable.

The film also documents Adinig’s activity on social media as she shares her own experiences of illness and mistreatment. For example, we see a screen grab of a Twitter post from May 26, 2020, in which Adinig tweets “In the ER for the 3rd time with heart palpitations please pray” along with a selfie of her in a mask in a hospital examination room. The film’s voiceover states, “Without answers from the medical community, long haulers have turned to each other for support.” We then see a supportive exchange between Adinig and Miranda Erlanson in a Facebook group for Covid long-haulers. Adinig posts, on September 8, 2020, that she is “So thankful for my fellow post covid friends. Couldn’t ask for kinder, stronger, more resourceful or more giving group to suffer through this with #longhauler,” and Erlanson responds, “Right back at ya! [three heart emojis],” followed by a humorous exchange about “wheelchair decor.” This sequence showing the importance of social media for creating networks of support is then followed by conversations between the two women on Zoom, presumably made for the film. They recall how they became aware of each other on social media because they shared similar symptoms, especially difficulty eating and even drinking water. In their Zoom conversation, Adinig says to Erlanson that, seeing posts from Erlanson, she thought, “Oh, she’s my COVID twin” (Figure 6). The Zoom gallery format is ideal for capturing this statement about their feeling of close connection that emerges from their similarly bizarre and debilitating symptoms. The film’s voiceover notes that, “Both women have struggled to find doctors who take them seriously,” and Adinig jokes of a typical doctor’s response to her and her condition: “Oh, it’s a hysterical woman. I need to give her an anti-depressant.” Here again, hysteria becomes the default diagnostic category for an illness not yet fully understood biologically, and the means by which doctors dismiss the epistemic authority of long-haulers like Adinig and Erlanson on their experiences of their bodies.

Despite their similar symptomatology and identification with each other through shared symptoms and mutual support, Adinig’s and Erlanson’s experiences with health care are quite different, which Erlanson realizes can only be explained by the fact that Erlanson is white and Adinig is Black. Adinig describes being treated “as a threat” by hospital staff even though she is usually in a wheelchair. She documents on social media how one hospital, Inova Alexandria, called security on her rather than helping her. And Adinig is shocked to learn that she was drug tested on numerous visits to the ER, even though she has no history whatsoever of drug use. Erlanson is also shocked to learn Adinig has been drug tested. She tells Adinig on Zoom, “I saw your video and I really felt like there’s nothing different between us except our skin color. Why are they treating you like that? Didn’t you tell me that they keep drug-testing you? I’ve never been drug-tested.” Sitz interviews Iameta Nicole Barlow, a community health psychologist, on medical racism. Barlow states, “Institutions aren’t always safe for marginalized people, particularly Black people.” She describes how Black women are often viewed as “having an attitude” if they advocate for themselves, as Adinig tries to do. Sitz contacts Inova Alexandria for a statement and they refuse to take responsibility for their actions, saying, in a classic apology-that-doesn’t-apologize, “we are sorry to hear that this patient was dissatisfied with her experience.”20 The film ends with some positive signs that Adinig’s health is improving slowly. But it also ends with this brutal realization from Adinig regarding racism and illness politics in the United States: “You have to come to grips with there is no safe space for Black people in America.” This is a stark reminder for all of us of how illness politics intersects with racial, sexual, and class politics. This realization, however, does not end Adinig’s illness politics; rather it spurs her on in an ongoing struggle happening now in multiple modalities. This ongoing struggle in the present points toward other possible futures beyond denialism and dismissiveness to new forms of illness and disability politics in action.

I end with an image of long Covid as both an illness and illness politics characterized by ongoingness. Like #ADAPTandRESIST, #LongCOVID and the illness politics surrounding the making of it make visible what might otherwise remain hidden from public attention. And as with #CripTheVote and #TimeForUnrest, online community building creates the conditions of possibility for participation of people otherwise missing from public life. These hashtags provide snapshots of illness and disability in action in the present moment, and through the hashtags, the violence and exclusions of recent policies are revealed. These hashtags also reveal a multiplicity of practices—of vulnerability and heroism, confrontation and compromise, exhaustion and endurance—in the ongoing struggle for care, access, and participation in public life.