In May of 2020, Elisa Perego, an Italian archaeologist living with disabling symptoms in the wake of an acute infection of SARS-CoV- 2 tweeted the phrase #LongCovid on Twitter (now X) for the first time. She was residing in Lombardy, Italy, which was an early epicenter of the pandemic where many people were suffering not only from the acute virus but also a constellation of symptoms that lingered. Perego described her personal journey with the condition to be cyclical, progressive, and multiphasic, attracting thousands of retweets [9]. This was in part because early in the pandemic, the idea of a chronic post-viral condition had limited visibility or understanding in the media, clinic, and society. Even though people were beginning to recognize these symptoms around the globe, still there was no name or collective recognition of the condition. “Long Covid” was immediately swept into everyday use in support groups, advocacy organizations, and medical dialogue. This was the first time a patient activist took control of naming a new health condition through digital activism that was widespread and impactful. This type of digital activism became a defining feature of the Long Covid experience.
The Long Covid origin story demonstrates a patient-driven framework that has pushed the identification of a complex chronic illness in a direction that is sometimes in opposition to the medical establishment. Even so, several high profile early Long Covid activists pushing for this term’s use were also medical doctors who experienced medical dismissal and gaslighting (see [26]). In this case, the cultural idiom of Long Covid that arises is not bound by ethnic or linguistic identities, but rather spreads through digital connectivity and online illness narratives. Long Covid reflects how global “flows” of activism and idiomatic knowledge, and all of the inequities that can shape such flows, play an important part in medical spaces, even if the idioms did not originate from medical knowledge and power to begin with. Patient-driven language and priorities, then, reveal a power through digital “spreadability” where “those that listen to, care about, and ultimately aim to speak to the needs and wants of their audiences as crucially as they do their own” become successful in transmitting a core message, idiom, or value [14]: x).
Yet, as patients organized in these spaces to push against, in many cases, hegemonic forms of medical knowledge and power from which they felt excluded and under-recognized, they also created what Marc Lamont Hill (2018) has called “digital counterpublics.” Hill defines digital counterpublics as “any virtual, online, or otherwise digitally networked community in which members actively resist hegemonic power, contest majoritarian narratives, engage in critical dialogues, or negotiate oppositional identities.” In this case, people with Long Covid rapidly formed digital counterpublics of patient activists advocating for recognition, survival, and support. This may be understood in part by multiple Long Covid support groups that emerged on various platforms, such as Facebook and Reddit, which served a public eager for dialogue, learning, and privacy, which were cultivated apart from the original one.
In what follows, we tell a story about digital activism in Kenya, starting with international conversations that became extremely localized. We use the case study of digital experiences of people in Kenya, a context where people have sophisticated digital lives but are reliant on hierarchical and exclusionary global information networks, to describe Long Covid online networks’ connections, hierarchies, and barriers. In this way, for more digitally peripheral Kenyans, the concepts and constructs of Long Covid remained somewhat out of reach, or out of touch, with their perceptions of, and experiences with, lingering post-viral symptoms following COVID- 19. We argue that most Kenyans may be engaging with digital networks from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This case study, then, exemplifies not only social networks at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.
Long covid activism
Long Covid emerged during a health activist renaissance. When Elisa Perego first tweeted #LongCovid in May 2020, Fiona Lowenstein was already using digital activism to bring together other people exhibiting chronically severe and disabling symptoms following an acute bout of virus. Lowenstein explained in the New York Times, “I felt alone in my healing process. I wanted information, and to connect with others who shared my experience.” She quickly found, via online networks she was helping to build, that she was not alone. Millions of people around the world would be afflicted with the persistent form of Long Covid over the course of 2020, and some of them have never recovered. In some ways the post-viral form of COVID- 19 resembles the many people who were irrecoverably disabled from the Great Flu pandemic of 1918 or from viruses that cause prolonged symptoms and diagnosed as ME/CFS, short for myalgic encephalomyelitis/chronic fatigue syndrome. However, unlike previous pandemics, digital activism and online communities played an outsized role in cultivating a global recognition of Long Covid and legitimizing the condition very early on.
At the beginning of the pandemic, Lowenstein was the president of a queer feminist wellness collective called Body Politic that, rooted in the disability justice movement, cultivated a space for inclusivity, accessibility, and crucial discussions about health, wellbeing, and justice. Lowenstein and Body Politic board member Sabrina Bleich initiated an online support group in WhatsApp for people suffering from Long Covid that grew to help more than 14 k members residing in over 30 countries. Many people sought these communities because in 2020 they, like Lowenstein, felt completely alone: they felt dismissed and disbelieved by family, friends, and clinicians. This experience unfortunately is common among people living with complex chronic illnesses like ME/CFS, chronic Lyme Disease, and other conditions that lack a verifiable test, destabilize the body through multiple systems, and for which few effective treatments exist.
Supported early on by existing disability rights groups, Body Politic activists connected Long Covid patients with resources, information, and communities, quickly mobilizing a movement that became a source of comfort, information, and companionship for an illness that society would not formally recognize for some time. For many people living with Long Covid, this was the only space in their life where they felt comfortable sharing their experience and where others believed that their symptoms were real. Body Politic eventually transferred the WhatsApp group to Slack, where several channels formed, fostering distinct patient communities. Two channels of note developed into independent research and advocacy groups. One is known as Long Covid SOS, a UK-based charity that focuses on elevating knowledge and awareness of Long Covid through the recognition of, research on, and rehabilitation among those living with Long Covid. Another Slack channel known as “data nerds” became an independent organization known as the Patient-led Research Collaboration, or PLRC [19].
Although the Body Politic Slack Groups shut down due to lack of funding, their ongoing digital presence promotes other ground-up patient-led groups devoted to elevating the health and well-being of Long Covid patients. This work has also led to, built on, or supported the work of other organizations serving Longhaulers (which is a term coined by patient activist Amy Watson for those who were infected early in the pandemic and remain ill today). Some examples are The Mighty (a non-media platform for peer support), #MEAction (a decade old patient activist group), and several private Facebook groups, such as Black COVID-19 Survivors and Long Covid Families. These groups have also had a global impact, even though the original organizers were in the US and UK.
Despite perceptions of the internet and social media as a flat and borderless online space, researchers routinely document how hierarchies, divides, and gaps shape what spreads online, and how such “spreadable media” is taken up into broader cultural contexts. Internet spaces and cultures can reflect and amplify existing inequities, even as they can also offer spaces for cultural thriving, connection and joy among marginalized groups [4, 5, 14, 29]. Like other technologies, a wide range of cultural and social factors affect how internet technologies are taken up and used, as well as how users in turn shape those technologies over time. While many African countries, and particularly Kenya, have experienced rapid expansions of the digital public sphere, scholars observe that in Kenya, as elsewhere, “the distribution of digital power and profit can disproportionately serve the dominant” [33]: 4). In Kenya, Davis [10] and colleagues have identified several important barriers that contribute to inequities in how people use the internet for digital patient activism. This includes things like the cost of airtime and limited access to free information services, which has disproportionate impacts on people with intersecting vulnerabilities, such as poor young women. Language can also be a significant barrier, given that English is the dominant language online and many African languages are poorly represented or translated in online spaces [10].
Even while digital organizing happening around Long Covid idioms is both widely visible and rapid, patient and medical recognition of Long Covid in places like Kenya is far more limited. Next, we discuss how and why digital inequities contribute to that phenomenon, and how it is shaping broader global stories about what Long Covid is, and who is most impacted by it. In doing so, we center the story of an elite Nairobian (who we call Kawera) who is considered a Long Hauler (because she has been sick since early 2020) who engaged in the digital center from the beginning. However, as she realized many of her fellow Kenyans had limited knowledge and access to these dialogues, she developed a smaller private Long Covid community through the Facebook platform exclusively for Kenyans. This platform was an attempt to cultivate dialogue among other Long Covid patients in Kenya who are less connected to global illness communities and activism. We juxtapose her narrative with a less digitally connected person living with Long Covid in Nairobi (Awiti), who has engaged primarily online with Kawera, who has built an intimacy among Kenyans living with Long Covid in a more local and curated digital space. On the one hand, this story illuminates the epistemic inequity of Long Covid in these digital spaces. On the other hand, the story reveals how these global digital communities have ripple effects that create possibilities to meet people where they are and organize local dialogues that are culturally situated and meeting the needs of those patients who are often ignored and less understood in global narratives of chronic illness.
Methods and context
Before we shift to these case studies, we describe the methods and context of this article, situating our manuscript here on digital activism within a larger study of Long Covid patient experiences and ethnographic observations and interviews with physicians caring for people with Long Covid in Kenya. Despite the extent to which COVID- 19 travelled around Kenya, Long Covid surveillance, research, and media exposure of people living with the health condition is limited. This may be because most African countries reported lower prevalence and more mild cases of COVID- 19—attributing these findings to younger populations [24]. Still, some have projected that the highest worldwide COVID- 19 prevalence afflicted the African continent, with possibly two in every three people having been infected by COVID- 19 by 2021 [18]. Yet, a culture of silence around the health condition has emerged not only because of the lack of familiarity around the symptoms but also because people fear if they reveal a Long Covid diagnosis others will perceive them as hiding a “more serious” condition (see [3]). Because so few Kenyans have spoken publicly about Long Covid and limited research exists about the condition, we know very little about how many people might be affected.
This exploratory study takes place in and around Nairobi, Kenya. We recruited 23 Long Covid patients from public hospitals in Kenya and from online networks (Facebook and WhatsApp). Our 23 interviewees with Long Covid were from different parts of Kenya, but they were largely sophisticated in their engagement with social networking, which offers the potential to bring together temporally and geographically dispersed actors towards a common purpose. Because Long Covid is rarely diagnosed in Kenya, few people identify with the condition, even though there are most likely many who manage persistent post-viral symptoms. Two in three people we interviewed were middle age, women, and middle class (like Awiti). Most people had completed college (high school) or university, revealing the elite sample (like Kawera, who uniquely attended university in the United States).
In this article, we use terms elite patients and non-elite patients to depict differences within and between digital hierarchies, but by no means do we consider this to be a bifurcated duality as there are so many varied differences within and among people across socioeconomic groups, national boundaries, and digital literacies. We use the phrase elite patients to convey those residing in highly-resourced settings or with a high socioeconomic status within a lower-resourced setting. Working off this definition and understanding of “access intimacy,” a term coined by queer disabled activist Mia Mingus [23], we argue that the ties that bind people together online often involve what symptoms emerge and how to seek care and live well with a disability. We discuss the digital center and periphery in ways that communicate how people connected about their illness symptoms, diagnoses, treatments, and experiences. In this way, elite patients were engaged at the digital center, while we argue that non-elite patients were engaged in the periphery with digital and non-digital connections through which they cultivated other social networks to communicate, share, and experience their illness experiences.
All interviews with consenting participants were conducted virtually in a zoom/teams call in either English or Swahili, took about 60 min to completion and were recoded. Then, all audio-recorded interviews were transcribed directly into English. Researchers wrote down lengthy field notes about each interview to capture various aspects of health and illness, including how participants expressed themselves in relation to their Long Covid experiences, which may not have been captured in the transcript. The team developed a codebook based on the fieldnotes and transcripts that encompassed the several themes that emerged from the project, from symptoms to beliefs and experiences related to and apart from both digital and medical worlds. Field notes together with transcripts were coded and thematically analyzed with the aid of QSR Nvivo Version 14 software.
In this study, we focus on two case studies to illuminate how Long Covid activism may differ based on patient experiences with, and access to, digital communities. The first case is Kawera’s which portrays how her access to international networks influences how she perceived her illness and was able to address both her symptoms and treatment to find a new baseline and identity in the face of illness. The second case is from Awiti who came upon a local digital networks that Kawera developed for Kenyans, which not only enabled her to understand her symptoms and seek treatments for her illness but also to combat stigma that swelled around her.
Kawera’s story
Kawera, a forty-year-old entrepreneur in Nairobi who attended university in the United States, got sick with COVID- 19 on a flight back from the Netherlands early in 2020. Sick with the Delta wave of COVID- 19, her physician gave her antibiotics and medications for acid reflux, sending her home. By April she felt recovered and jumped right back into her work, exercise, and busy life without giving herself enough time to rest and recover. Over the next several weeks, Kawera overexerted herself at home and with work before she was ready. One day in mid-May, she overexerted herself and had an immense crash for the first time. She said, “And now I know probably the worst thing that I could have done with Covid would be to over-exert myself, and to push myself into things that I wasn’t ready for. You hear this story so many times from people with Long Covid. They remember that one time that they did something that they shouldn’t have and then the crash came.” Kawera went on to explain how the condition completely “shattered” her life. “The first thing I think that a lot of people deal with is that you really feel like you become a shell of the person that you were before. And that’s obviously very painful. You don’t recognize yourself anymore. Your body doesn’t work the same way. Your brain doesn’t work the same way it did. Your capabilities are completely different for a lot of people. You become very dependent on other people.”
Kawera joined the Long Covid SOS group early on, which was a part of Body Politic. She became so involved in the group that she moderated a break-off group called Integrative Healing for Long Covid. At the time, she was extremely sick: she experienced hallucination, her eyesight deteriorated, and she was losing her hair. Her doctor said there was no way she was feeling all those things and that they knew COVID-19 only affected you for a few days, suggesting she should deal with her serious personal issues and seek therapy. These dismissive stories have been documented around the world [8, 17].
Kawera sought care from a functional medicine doctor who was recommended to her by her father. She considered herself privileged to access the doctor saying: “I have been lucky to have really good support. I’ve realized that when my mental health is not okay, and when I’m going through like periods of depression, then my physical health—I mean, the two go hand in hand. So, I think at some point, even my functional medicine doctor said, ‘Okay, let’s calm down on the supplements and the treatments. Let’s really look at your mental health, and the support that you’re getting with that and the healing that you’re really focusing on getting. And I think, as that side of my life has started to heal, then I found that also my physical symptoms started to improve.”
Kawera knew she was living with Long Covid but it still wasn’t diagnosed. She explained how diagnose is a trigger word for people living with Long Covid because many people were not diagnosed and doctors use that to invalidate their experiences and the fact that they are going through it. Doctors don’t know how to diagnose it, she told us, because Long Covid experiences are all so different. She said, “The most stressful experience is the emotional, mental part – losing yourself and not knowing who you are. It leads to depression.”
Kawera’s access to information and financial ability to self-advocate for herself cultivate an opportunity for her health. This was not only through her access to digital communities such as Long Covid SOS but also through knowledge networks that built upon early opinion writing in paywalled journals, such as The Atlantic and The New York Times, which were possibly not accessible or even visible to most Kenyans. It was through these knowledge networks that Kawera was able to understand her symptoms and seek out healing pathways. Through her healing journey, she underwent several tests and found a treatment, which was a combination of medications and life changes, that helped her heal. One of these changes was moving from Nairobi to a smaller town on the foothills of Mount Kenya. She works from home now and enjoys the slower pace of life away from the hustle and bustle of the capital city. Yet, Kawera’s access to doctors and functional medicine tests differs in significant ways from most Kenyans. Most people that we have spoken to have demonstrated their lack of access to this flexibility to move between medical modalities and investigate the root of their illness or possibilities for healing (all see, [2, 20, 25]).
The lack of resources for other Kenyans inspired her to start a Facebook group for Long Covid patients residing in Kenya. “I started it in early 2021,” Kawera explained. “I shared my story in December of 2020 on Facebook and the response that I got was completely unexpected. I had hundreds and hundreds of people, you know, writing and commenting, and most people had never heard of [Long Covid].” Kawera explained, “Long Covid groups with other Africans are really different from international groups.” She continued to explain that while participants from international groups talked freely about their experiences with Long Covid, in Kenya, people were laid back and did not want to express themselves, in part due to lack of knowledge and stigma attached to Long Covid. “I think a lot of people here in our society feel like it should be something that’s kept private,” Kawera explained. “Speaking openly [about Long Covid] is sometimes also seen as a weakness. So you know, it’s not really something that you want to show. So it’s definitely something I’m trying really hard to get people to be able to open up more about it.” In fact, Kawera was the first Kenyan to go on a local TV station in Kenya in 2023 to speak openly about her Long Covid.
Today Kawera manages a Long Covid Facebook group that has about 200 members who are all Kenyan and living with Long Covid. She manages membership, spurs conversation, and engages deeply with participants who have limited avenues? to share their experiences. Given that Kawera is the administrator, she is the only one who provides access of new people to the group; once she determines a genuine request, encourages participation as well as ensures that members privacy and other confidential discussions are maintained within the group. She explained to us that, “any time, like whether it’s doing something in the newspaper or going on television and doing an interview, then, of course, it’s just sort of like an influx of people joining the group.” However, she still finds that the stigma and lack of awareness around Long Covid makes it difficult for people to freely talk about their lived experiences. Even within such a group, Kawera described how she often needs to prompt people to share about their symptoms, which is a drastic shift from the international communities of patients she has engaged with throughout the pandemic where people are often forthcoming about their illness profiles.
Many patients have begun self-isolating, hiding, and not wanting to share about their conditions in part because of stigma. We found that, although there may be some external stigma, many people may feel inhibited to share more information about their personal illness journey as a result of an internalized or perceived stigma [3]. This may play out in the group in meaningful ways, shifting the culture of group information sharing. Kawera described how she often needs to probe to encourage people to interact, inquiring who needs help with a recommendation, what symptoms are you having, and do people need information on a particular treatment? Kawera has found there are always a couple outspoken group members but mostly people sit quietly and consume the information. It is hard to measure how many recommendations people use in their personal lives without sharing that information with the larger group. Kawera notes that “I think a lot of people here in our society feel like it should be something that’s kept private.” She also tries to protect the group from reporters and people doing research because, she comments, “people think it’s something that’s kept private, seen as a weakness—not something people want to show.”
Possibly the largest impact of Long Covid on people like Kawera is the fact that they cannot work. She explains how Long Covid is expensive to treat and manage, which becomes even more debilitating when it’s hard to maintain work and financially provide for your family. Working in the business sector and partnering with family, Kawera has the flexibility she needs to focus on her health. However, many people she’s connected with through the Long Covid Facebook group in Kenya have a much harder time. She finds her work with other Kenyans to provide a platform unlike any other available where their symptoms and experiences are taken seriously, and possible treatments and supports are uncovered within their communities.
Awiti’s story
Awiti is a 41-year-old single mother of two daughters. She’s not sure where she got COVID- 19 but she relayed how deeply her struggles with Long COVID affected her ability to work and care for her children. She has a good job in marketing. However, shortly after losing her sense of taste, she got very sick. Although she was not in any pain, she said; “I was just sick and felt like dying. I did not know what was happening. I had fever and chills which made me seek medical care at the nearest hospital.” At the hospital, Awiti was prescribed medication for fever and chills but instead of getting better, “I continued feeling sick and very weak each day.”
Three months later, she had a flu that wasn’t going away and at that time she was also weak. Awiti’s health continued to deteriorate, even though she focused on eating healthy foods like porridge. At some point, Awiti collapsed and her neighbors assisted bringing her to the hospital. Awiti became conscious while at the hospital and the first thing she heard doctors asking her was, “What do you normally take for your diabetes, your sugars are extremely high?” Awiti explained, “I told them I am not diabetic. […] They told me no, you are diabetic, you have been diabetic for the last three months. I had no idea.” Awiti went on to explain other symptoms she frequently had, from memory loss to hallucination.
Awiti recalled numerous endless symptoms, noting that “every day, there was an additional symptom. But no one could understand me, in fact by the time that year was ending and I have lost my mobility, I used to be called lazy, and that I don’t like to work, I have been branded all forms of things. I had had enough. So, by that year, I started realizing I am getting weak, I was unable to clean, I used to feel cold, and I could overdress. Everything about me changed even dressing because I would cough continuously like wind, anything smoke, I couldn’t take cold stuff until around March again.” What bothered Awiti most was the fatigue, panting, cough, and treatments for both diabetes and pneumonia. She described having water in her lungs and having to follow a strict diet to manage her weight and sugar. Her greatest worries were financial: how could she care for her children if she lost her job? In Kenya, structural barriers like limited health care coverage and medical leave, limited disability support, and mobility as a primary recognition as disability, may have also played a role in Awiti’s feelings of stigma and isolation. Awiti asked God, “what have I done wrong?” She explained, “I am in a fumble mode like either to put food on the table, to foot bills or to take care of my health. I am confused and like I have told you I have no one, absolutely no one. And no one can understand me.” Feeling alone and desperate made her start to look for information online, to explore whether there were other people with the same medical symptoms and experiences as her own. That is how she ended up in the Long Covid support group on Facebook.
Many others we spoke to discussed how important Kawera’s group became in their lives as they navigated their Long Covid illness. Awiti explained how it was not only the group that helped through her illness experience, but it was also the courage Kawera had to speak about her personal experience living with Long Covid on national media in Kenya. “I realized that I was becoming stressed up with my conditions, and I started to Google” my symptoms, Awiti explained. “That’s when I saw what people were going through. But then, the only time I realized exactly what was wrong with me was when Kawera came on TV last year. She started talking about her Long Covid experiences, and I was like, this lady, does she know my situation? She mentioned fatigue, the loss of teeth. She mentioned quite a number: the memory, the allergy, cold, you are not able to do stuff. You can even clean something so small [and] the next thing you are so sick, or you are so hot. So, I noted there is something wrong with me. That is the time I realized that, Awiti, you are not suffering from depression. Awiti, you are not lazy. You are not disorganized like what you have been thinking. That is when I reached out and joined her group.”
Awiti explained how “when I joined Kawera’s group and the page, everything fell in place. I followed her keenly, I started noticing there is nothing wrong with me, I am just going through what some people are also going through. So, mentally, when I told you about health, even mental empathy I started recovering, and that helped me start to get well.” Awiti has gotten support from others who share the same experiences and who understand her social and health struggles. She noted that initially, she had visited the high-end hospitals and healthcare providers were not able to offer comprehensive care. Although not a traditionalist, she started taking drinks with local herbs such as ginger and garlic for her flu symptoms and aloe vera. She had gained a lot of weight because she was mostly immobile, so she completely changed her diet to include fruits but also focused more on proteins which were body building.
By July 2023, Awiti had healed from most of the symptoms. She cut off her hair which was falling off and growing back completely white. She can now bathe with both hot and cold water and even have some ice-cream occasionally without getting the chest problems. She reflects on the disease and says it made her poor; she only survived by the grace of God. However, going back to society has been hard for her because she feels people judge her and she has limited social support. She also doesn’t integrate with people when she feels overly stressed. Awiti is thankful for small things and was slowly regaining some health. A couple months after the interview, Awiti called back to speak with Lucy; she said that although she felt like she was completely healed, she had some symptoms come back. She laughed and thought she had been through all that. Yet, she remained positive and had a positive outlook to life.
Hashtag activism
These case studies of digital patient experiences in Kenya, a context where people have sophisticated digital lives and are engaged in global information networks, demonstrate how Long Covid patients experience digital hierarchies and barriers, as in other networks. Consequently, the concepts and constructs of Long Covid remained somewhat out of reach, or out of touch, with many Kenyans’ perceptions of, and experiences with, lingering post-viral symptoms following COVID- 19. We argue that a majority of Kenyans may be engaging with digital networks differently and from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. In this way, social networks at the digital periphery as well as the complexities situated within the periphery itself, which is at important social nodes, may be connected to the digital center.
And yet the most visible forms of activism are what Lisa Diedrich [11] has called “hashtag activism”—a portal through which illness becomes a site of “political struggle” [11]. Callard and Perego ([9], p. 2) argue that in the weeks that followed Perego’s introduction of the Long Covid hashtag, “#LongCovid became increasingly prominent – complementing other hashtags used by emergent patient collectivities (e.g. #apresJ20 in French, #covidpersistente in Spanish,#MitCoronaLeben in German; #koronaoire in Finnish; [and] #長期微熱組 in Japanese).” It was the first time a patient activist named a health condition on social media and it stuck, eventually spinning into support groups, advocacy organizations, and medical diagnoses through a collective dialogue [31]. Although for years embodied health movements have organized campaigns and built social movements on social media and elsewhere, navigating the thorny cultural waters of disbelief [6], rarely have patient activists translated their claims into epistemic authority so quickly.
However, the translation and impact of this activism has not been evenly dispersed and in many ways is inherently unevenly utilized because of digital networks and priorities. The access intimacies [23] also had barriers in part because not everyone accesses the same digital communities or uses digital communities in the same way. While global experts have coalesced around similar definitions of Long Covid, so too did elite patients connect to cultivate digital intimacies and interpretations of Long Covid. We argue that what some Long Covid patients experienced is impossible to divorce from the digital activism that has drawn together a remarkable global patient community, causing a ripple effect on how people define and experience the self and illness throughout the world. Because these global dialogues often center around, and cater to, more elite, educated, and better medically resourced, we contend that the cultural recognition of Long Covid symptoms and possibilities for care may center populations that are more proximate to elite circles of digital knowledge and care access.
Yet, hashtag activism has the power to address social inequalities in unique ways as well. Digital activism can transform core public health systems, such as disease surveillance and public health emergency response, by creating and supporting interactive networks of communication, coordination, and collaboration that connect grassroot communities to counties, national or even regional platforms. The hashtag #BlackLivesMatter, for example, has been used to facilitate international conversations and political debate about racial inequalities [13]. Others like hashtag #HelloMyNameIs has been used to raise awareness of the need for better communication in health care and changed National Health Service (NHS) practice across the UK [12]. In Kenya, the hashtag #JusticeForSharon was integral to the justice movement around femicide [30].
Beyond hashtags, patient illness narratives online, such as in the Fight for our Health campaign against the repeal of the US Affordable Care Act, have been politically powerful [22]. Such online activism has involved grass roots, user-led movements that have come directly from the lived experiences of individuals in oppressed, marginalized, or under-represented groups. However, such activism must also face global barriers to participation and spread. Digital patient counterpublics, particularly in places like Kenya, need equitable digital inclusion and digital rights in order to thrive and reach more patients [10].
From global to local: long covid dialogues
Global flows of ideas, products, commodities, capital, and people have long transversed borders, even influencing how local disease categories and treatments emerge and manifest [7]. Medical anthropologists, starting with Na, 2022, have used the frame of cultural idioms of distress to convey the ways in which bodily idioms of distress (such as fatigue or chronic pain) may be interpreted as a somatic language for distressing experiences in a culturally meaningful way [27, 28]. Anthropologists argue that such idioms reveal how culture is not a static entity but rather one that is fluid and changing in relation to global ideas, concepts, and agendas [16]. The concept has been written about extensively across contexts, particularly through the idiom thinking too much [1, 15], which is experienced around the world but somewhat differently in each context. For example, in Kenya, local meanings of “stress” and “depression” center the cultural idiom thinking too much as a core symptom; while used colloquially, these terms, therefore may differ in meaningful ways than the medical categories applied to them, referencing different psychological, somatic, and social dimensions not captured in the biomedical categories [20]. We wonder if Long Covid may have taken on a similar frame, particularly as it has become deeply entangled in dialogue in the digital periphery, as well as off-line.
Digital activism in counterpublics like the Long Covid Facebook Group in Kenya has ripple effects as illness idioms are taken up and circulated online. Through their collective action on online platforms, Kawera and Awiti were able to challenge various assumptions related to Long Covid in Kenya socially. For people like Awiti, this communal sharing of symptoms and suffering provided a portal into a better life in part because she realized that her symptoms were real and that her sickness was not imagined. She was able to engage interpersonally with those they loved about her illness (even though not everyone understood or stood by her). Using the Long Covid idiom reveals not only her learning through Kawera but also her more peripheral but real connections to the larger Long Covid digital networks that Kawera joined so early in the pandemic. Having people to trust—even if they never knew them in the first place—can have a significant impact on how people see themselves in the world. For Awiti, a trusted digital support group reminds her that she was not lazy or lying about her sickness but rather shouldering the chronicity of an extended pandemic. These experiences reflect common ways that online patient social networks can help validate illness identities and experiences, particularly related to misunderstood or marginalized chronic illnesses.
Patient-led digital communities weave through divergent networks that may overlap and mutually reinforce each other. It is difficult to measure how breaking the silence on Long Covid in Kenya (for people like Awiti) may have affected clinical spaces. However, it’s clear from stories like Awiti’s that people built unexpected opportunities for trust and validity of their symptoms and illness experiences. Research on other idioms (like stress and depression, which are linked to thinking too much) in Nairobi suggest that such idioms often take on a life of their own in social spheres that both depart from and build on medical frames. In Nairobi, the authors have argued that “how our interlocutors used “thinking too much’ in their descriptions of both emic and etic etiologies of distress represents a local deviation from how “thinking too much” is often conveyed, underscoring the interrelatedness of these global and local idioms” ([21] p. 636). We wonder how Long Covid has emerged as an illness category in Kenya more broadly, and in what ways the digital center may influence local use of the term not only among those who are members of Kawera’s Facebook group but also among their loved ones and the larger community.
We theorize that patient activism may play out differently in Kenya when compared to western contexts in part because of the legacy of post-viral conditions that take on a certain cultural saliency in Kenya and may shape how people think about Long Covid. For instance, there may be endemic wisdom around the chronic effects of infections in Kenya, from HIV to chikungunya and dengue, that may influence how Kenyans themselves think about Long Covid in the body as well as society differently. A specific query may be: in what ways might affects like anemia from prolonged malaria exposure affect people with Long Covid in Kenya, in comparison to a context where such exposures are rare? The possibilities for understanding the condition are expansive in this context, and have global relevance.
Relatedly, we wonder how the Long Covid idiom may evolve (center-to-periphery or even periphery-to-center) through time. Possibly Kenyans may resist or transform Western idioms like Long Covid, and thereby influence global narratives that may conflate laziness and fatigue with post-viral conditions. It is these historical and social dynamics that will play out in shaping what Long Covid becomes over time as a social experience and medical condition. Even still, it will be impossible to disconnect the influence of central digital networks on both conversions within peripheral digital communities and the medical communities linked to them.
Stigma around Long Covid—albeit a global phenomenon—emerges in distinctly cultural ways that are worth considering. Possibly stigma was a common form of inhibition for sharing about personal experiences but the ways in which stigma played out in society and people’s conscious is beyond the scope of this paper. People may remain inhibited for divergent reasons in digital support groups, particularly when groups are focused on health and bodily symptoms. For instance, they may fear not only that someone in their community might learn something they have tried to withhold or hide from neighbors or employers. Others might also fear that their personal information could be captured online, inhibiting their sharing, but enabling their consuming, of information. Studies focused on what silent members of the group do with the information they consume would be an exciting and important future endeavor that may provide insight into how Kawera’s Long Covid Support Group in less visible ways to influence culture, politics, and experience around Long Covid in Kenya.