Long COVID affects millions of individuals worldwide but remains poorly understood and contested. This article turns to accounts of patients’ experiences to ask: What might narrative be doing both to long COVID and for those who live with the condition? What particular narrative strategies were present in 2020, as millions of people became ill, en masse, with a novel virus, which have prevailed three years after the first lockdowns? And what can this tell us about illness and narrative and about (...) the importance of literary critical approaches to the topic in a digital, post-pandemic age? Through a close reading of journalist Lucy Adams’s autobiographical accounts of long COVID, this article explores the interplay between individual illness narratives and the collective narrativizing (or making) of an illness. Our focus on temporality and suffering knits together the phenomenological and the social with the aim of opening up Adams’s narrative and ascertaining a deeper understanding of what it means to live with the condition. Finally, we look to the stories currently circulating around long COVID and consider how illness narratives—and open, curious, patient-centered approaches to them—might shape medicine, patient involvement, and critical medical humanities research. (shrink)

In this article, we argue that shaming interventions and messages during Covid-19 have drawn the relationship between public health and shame into a heightened state of contention, offering us a valuable opportunity to reconsider shame as a desired outcome of public health work, and to push back against the logics of individual responsibility and blame for illness and disease on which it sits. We begin by defining shame and demonstrating how it is conceptually and practically distinct from stigma. We then (...) set out evidence on the consequences of shame for social and relational health outcomes and assess the past and present dimensions of shame in the context of the Covid-19 pandemic, primarily through a corpus of international news stories on the shaming of people perceived to have transgressed public health directions or advice. Following a brief note on shame (and policymaking) in a cultural context, we turn to the concept and practice of ‘shame-sensitivity’ in order to theorise a set of practical and adaptable principles that could be used to assist policymakers in short- and medium-term decision-making on urgent, tenacious, and emerging issues within public health. Finally, we consider the longer consequences of pandemic shame, making a wider case for the acknowledgement of the emotion as a key determinant of health. (shrink)

In Brazil, the health emergency unleashed by the Covid-19 pandemic must be understood in the context of the government administration of the former president, Jair Bolsonaro. The new coronavirus was turned into a war machine, something already seen in other moments of the history of indigenous peoples, when epidemics were strategically used to promote indigenous genocide and usurp their territories. The Sanöma, a subgroup of the Yanomami language family, assert that Covid-19 did not leave individualized traces of ‘sequelae’ but made (...) itself felt in the deaths that could not undergo the traditional funeral rites due to the sanitary measures, generating a cosmological and existential tension for the collective as a whole. It was also felt in the invasion of their lands by thousands of miners who brought violence and malaria to the communities, debilitating their food sovereignty, and in the dismantling of public health services in the indigenous land. Time was suspended, and the infection continued with the accompanying violation of rights, with a divergent understanding of who is recovered or who is healthy. This article is the result of a Covid-19 research project conducted in partnership with the Sanöma leaders. Based on reports from the Sanöma themselves, reports about the Yanomami and the government of former President Bolsonaro, interviews with indigenous leaders in newspapers and reports produced by indigenous organizations and their supporters, a set of information about Covid-19 among indigenous peoples and violations of human rights among the Sanöma people were systematized and analyzed and now make up this article. (shrink)

This paper investigates the relationship between the experiences of mass vaccinations against two pandemic viruses: the swine flu in 2009–2010 and COVID-19 in the early 2020s. We show how distressing memories from the swine flu vaccination, which led to the rare but severe adverse effect of narcolepsy in approximately 500 children in Sweden, were triggered by the COVID-19 pandemic. The narcolepsy illness story has rarely been told in academic contexts; therefore, we will provide space for this story. It is presented (...) through a dialogue with the aim of shedding light on the interrelationship between pandemics—and between mass vaccinations—to investigate what could be termed cultural wounds that influence societies because they are characterized by the difficulty of talking about them. The paper explores the multiple shocks of illness in life and what can be learned from them by sharing them. (shrink)

Illness and injury are often accompanied by experiences of bodily objectification. Medical treatments intended to restore the structure or function of the body may amplify these experiences of objectification by recasting the patient’s body as a biomedical object—something to be examined, measured, and manipulated. In this article, we contribute to the phenomenology of embodiment in illness and medicine by reexamining the results of a qualitative study of the experiences of nurses and patients isolated in an intensive care unit during the (...) first wave of COVID-19. Drawing upon the phenomenological concept of embodiment—as developed in the work of Edmund Husserl, Maurice Merleau-Ponty, Jean-Paul Sartre, and Emmanuel Levinas—we reconsider how bodily objectification manifests in complex clinical encounters. We show that, in these settings, objectification is not simply the unilateral act of a clinician objectifying a patient. Rather, both clinicians and patients reported a variety of objectifying experiences influenced by their interactions, the immediate context of the intensive care milieu, and the broader atmosphere of a global pandemic. In light of these findings, we argue that bodily objectification in illness and medicine can often be more complicated than typically presented in the phenomenological literature. (shrink)

Illness and injury are often accompanied by experiences of bodily objectification. Medical treatments intended to restore the structure or function of the body may amplify these experiences of objectification by recasting the patient’s body as a biomedical object—something to be examined, measured, and manipulated. In this article, we contribute to the phenomenology of embodiment in illness and medicine by reexamining the results of a qualitative study of the experiences of nurses and patients isolated in an intensive care unit during the (...) first wave of COVID-19. Drawing upon the phenomenological concept of embodiment—as developed in the work of Edmund Husserl, Maurice Merleau-Ponty, Jean-Paul Sartre, and Emmanuel Levinas—we reconsider how bodily objectification manifests in complex clinical encounters. We show that, in these settings, objectification is not simply the unilateral act of a clinician objectifying a patient. Rather, both clinicians and patients reported a variety of objectifying experiences influenced by their interactions, the immediate context of the intensive care milieu, and the broader atmosphere of a global pandemic. In light of these findings, we argue that bodily objectification in illness and medicine can often be more complicated than typically presented in the phenomenological literature. (shrink)

In this paper, we draw on qualitative methods from the medical humanities and quantitative approaches from corpus linguistics to assess the different mappings of pandemic risks by Twitter (X) users employing the #Covid19nz hashtag. We look specifically at their responses to government measures around vaccines between August and November 2021. Risk, we reveal, was a major discursive thread in tweets during this period, but within our tweets, it was the vaccine rather than the virus around which hazard perception and response (...) were grouped. We find that the discursive stance of those opposed to the vaccine evoked entangled medical and political hazards, untrustworthy experts, obscure information, restrictions on sovereignty, threats to children, and uncertain future dangers, all of which positioned them within what Ulrich Beck termed the world risk society. We also found that these narratives of risk manifested in specific Twitter styles, which employed a consistently larger number of hashtags. The lack of conjunctions between the hashtags, we argue, encouraged a disordered reading of doubt and precaution, as the hashtags presented triggering phrases whose interconnections were hinted at rather than specified. By contrast, those who tweeted in support of government measures were rhetorically led by solutions rather than risks, with one exception: their perception of those who were vaccine opposed. We use scholarship on risk and precautionary logic to map out the contrasting positions in tweets addressing Aotearoa New Zealand’s pandemic experience during the closing months of 2021. (shrink)

This article explores affectivity, temporality, and their interrelation in patients who contracted COVID-19 during the first wave of the pandemic in Sweden and with symptoms indicative of post-COVID-19 Condition (PCC) that remained one year after the infection. It offers a qualitative phenomenological philosophy analysis, showing how being ill with acute COVID-19 and with symptoms indicative of PCC can entail a radically altered self-world relation. We identify two examples of pre-intentional (existential) feelings: that of listlessness and that of not being able (...) to sense what is real and not real, both of which, in different ways, imply a changed self-world relation. We offer an analysis of intentional feelings: how the fear of not “returning” to one’s previous self and the hope of such a return weave together the present and the absent, as well as the past and the future, in ways that make the future appear as constricted, disquieting, or lost. We argue that a phenomenological differentiation among experiences of living with symptoms indicative of PCC—through attention to the way intentional affectivity and pre-intentional affectivity help shape the embodied self’s attunement to the world—is apt to yield a better understanding of the variations within these experiences and contribute to clinical practice. (shrink)

As someone diagnosed with severe chronic mental illness early in my adolescence, I have spent over half of my life feeling out of step with the rest of the world due to hospitalizations, treatment programs, and the disruptions caused by anxiety, anorexia, depression, and obsessive–compulsive disorder. The effect of my mental health conditions compounded by these treatment environments means I often feel that I experience time passing differently, which results in sensations of removal and isolation from those around me. The (...) global shutdown caused by the COVID-19 pandemic seemed a way for normative bodies to experience the passing of time the way I always have. In this paper, I extend Dr. Sara Wasson’s analysis of the ways in which chronic pain resists narrative coherence to my own temporal experience of chronic mental illness, specifically my embodied experience of the pandemic. I use that embodied experience as a case study for examining how the reciprocal nature of time and narrativity, as outlined by Dr. Paul Ricoeur, can create isolation for those struggling with their temporality due to chronic mental illness. To acknowledge and grapple with the ramifications of discursive and material privilege involved in such situations, I include an analysis of Robert Desjarlais’s 1994 article “Struggling Along: The Possibilities for Experience among the Homeless Mentally Ill,” in which he investigates a similar phenomenon of being outside of structured sequential narrative time in the residents of a Boston shelter for the mentally ill. (shrink)