Losing the Ground of Hope: Abandonment, Despair and Suicide in long Covid

Prof. dr. Vivienne Matthies-Boon, Radboud University Nijmegen

Drawing on autoethographic work as well as ethnographic observations in both the Netherlands and Germany, this paper will explore how suffering and despair is experienced by many patients with severe Long Covid, for whom suicide even become a feasible option. Suicide, I argue, becomes a feasible option in Long Covid because it is the logical outcome of existential despair experienced by these patients in face of the multileveled abandonment in the physical, social, medical and political spheres simultaneously. It is hence not only the feeling that their bodies have abandoned them, but also that friends, loved ones, medics, doctors and politicians have deserted them. Here, abandonment, I argue should hence be less equated with Agamben's idea of exception and rather with Lesham's notion of radical disinterest.

      I argue that the encounter with such radical disinterest and indifference instils a deep sense of hopelessness amongst Long Covid patients, that ultimately flips into its most severe form: despair. In despair we do not merely suffer a disappointed hope or even a more generalized hopelessness that affects parts of our life, but rather in despair the very existential ground of hope is broken. The possibility to hope itself is in tatters, and neither the past nor the future can redeem the here and now. The despairing person is condemned to the here and now, robbed of a prospect of a better future and condemned to a past that appears dyssynchronous with present. Despair is hence a form of existential, nihilistic imprisonment, wherein we are abandoned to ourselves with no idea about how to go on as the ground of hope itself has been pulled from under one’s feet. It is in such a state of despair, that suicide arises as a question (Steinbock 2007) - not as a mental pathology, but as a logical outcome of the multileveled experience of abandonment that crushes the ground of hope itself. And thus we have to recognize that the most important responses to despair and suicide by Long Covid patients are not to be found in individualized therapy, but rather in the practice of social, medical and political solidarity. It is only this that may undo the multileveled abandonment that Long Covid patients face and work to repair the ground of hope.

The Spectre of Hysteria and the Marginalisation of (Medically Unexplained) Multisystem Diseases

Dr. Paula Muhr, University of Zurich and Technical University Berlin

Multisystem diseases, such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Lyme disease, somatic symptom disorder (SSD) and functional neurological disorder (FND), are characterised by a multitude of heterogeneous symptoms for which the present-day medicine fails to provide either a clear-cut pathophysiological or an aetiological explanation. Moreover, these disorders are epidemiologically more prevalent in women, another aspect that currently lacks a medical explanation. Despite their differences, each of these diseases has been implicitly or explicitly associated with hysteria, an age-old illness whose medical legitimacy has been perennially contested during its several millennialong history. In the medical discourse, SSD and FND are seen as current medical labels for the symptoms that had historically been referred to as hysteria, a legacy that contributes to the continued marginalisation and stigmatisation of these present-day nosological categories. Conversely, the association between hysteria, on the one hand, and long COVID and ME/CFS, on the other hand, has not been proven but is nevertheless often suggestively implied both in the medical context and the general public as a way of delegitimising the medical validity of these diseases. Hysteria, thereby, is not understood as a historical label for a genuine though vaguely understood disease but as a catch-all phrase that jointly designates what is viewed as typically female emotional instability, pathological attention-seeking, abnormal illness behaviour, and simulation of illness for personal gains. In short, hysteria is used as a label for a psychosomatic/sociogenic construct that has no place in the domain of medicine. My talk aims to explore how current dismissals of long COVID, ME/CFS and FND as genuine medical conditions are underpinned by enduring historical stereotypes of hysteria as a predominantly female pseudo-illness that lacks a genuine physiological basis and is “all in your head.” It further aims to shed light on how the implicit blaming of patients for their medically unexplainable symptoms is grounded in the still-present mind-body dualism that informs the medical framing of these multisystem diseases.

Round Table: Multispecies Oppression and Multispecies Health. Long Covid, Animals and Nature

Chair: Jin Qian

Speakers: Christopher Sebastian, Eva Meijer

In this conversation we discuss interconnections between long covid, nonhuman animals, and our shared environment. We also discuss strategies to move towards more just and caring societies.

Chair and Speaker Biographies

Eva Meijer is a philosopher, visual artist, writer and singer-songwriter. They write novels, philosophical essays, academic texts, poems and columns, and their work has been translated into over twenty languages. Recurring themes are language including silence, madness, nonhuman animals, and politics. Meijer also works as a postdoctoral researcher at the University of Amsterdam, writes essays and columns for NRC newspaper, and is a member of the Multispecies Collective.

Christopher Sebastian is a journalist, technical writer, and adjunct lecturer of media studies. He teaches in the School of Journalism, Media, and Visual Arts at Anglo-American University in Prague. He writes about food, politics, social media, pop culture, and animals.

Jin Qian's research interests lie in China's environmental governance and its global implications, more specifically at the intersection of food, animals, and the environment. Her PhD project is a collaboration between ENP and FNP, which centres on the wildlife practices in China's food systems and taps into the wild animal conservation versus utilization debates. This project intends to understand how changes in wildlife practices could help facilitate sustainable and ethical transitions in food systems and achieve interspecies health.

‘You just have to learn to live with it’ – Living with Chronic Illness in Relation to Linear and Non-progressive Temporalities

Femke van Hout – PhD-researcher, Tilburg University

In March 2024 the DutchHealth Council stated thatfibromyalgia, a chronic disorder characterized by widespread musculoskeletal pain and fatigue, should be recognized as a valid health problem by the Dutch Ministry of Public Health. Since fibromyalgia lacks a known physical cause, patients receive little to no financial and social support and are often faced with stigma and social isolation. According to Jan Willem Förch, the director of ReumaNederland, recognition might lead to more research into possible causes and treatments. ‘For too long, people with fibromyalgia have only been told that they just have to learn to live with it.’ (NOS, 2024).

‘You just have to learn tolive with it’ is a reaction thatmany people with persistent physical or mental conditions receive. In this talk I take a philosophical-anthropological approach, questioning what possibilities people in late modern, capitalist societies have to meaningfully ‘live with’ a long-term or chronic condition. With the help of historian George Weisz (2014), I will show that the history of the concept of chronic illness in medical and political discourse is intertwined with narratives of progression, capitalist production and crisis. Nowadays, people with chronicillness are often faced with either of these two reactions: they either hear that they have to work hard to get better, or, when ‘nothing can be done’, they hear that they will have to ‘live with’ the fact that the disease will probably never end. I argue that these extremes are in fact two sides of the same coin: both are intertwined with a linear, progressive conception of time which does not allow for other kinds of futures except those that fit on a linear timescale (Hutchings, 2008; Cazdyn, 2012; Baraitser, 2017; Davies, 2023). This makes living with a condition that does not develop progressively seem like an almost impossible task.

Despite the dominance of linearnarratives in medical andpolitical discourse, phenomenologists and queer philosophers of time and care show that concrete, embodied daily life experiences of chronic illness involve
meaningful ways of sharing and taking care of non-progressive temporalities (Freeman, 2011; Baraitser, 2017; Wool & Livingston 2017; Wright 2022; Davies, 2023). At the end of this talk, I suggest that taking time for these
embodied, relational practices might open up ways to help people to meaningfully live with a non-progressive condition.

References

Baraitser,L. (2017). Enduring time. London: Bloomsbury Publishing Plc.
Cazdyn, Eric (2012). The already dead. The new time of politics, cultureand illness. Durham, North Carolina: Duke University Press.

Davies, S. (2023). Waiting, Staying andEnduring in General Practice. PhD thesis, Birkbeck, University of London.

Freeman, E. (2011). Theorizing the chronic. InA. Thal (Ed.), Chewing the scenery. Edition Fink.

Hutchings, K. (2008). Timeand world politics: Thinking the present. Manchester: Manchester University Press.

NOS (9^th of March, 2024).Gezondheidsraad: Fybromyalgie geeft chronische pijn en verdient erkenning. NOS Nieuws. Gezondheidsraad:fibromyalgie geeft chronische pijn en verdient erkenning (nos.nl)

Weisz, George (2014). Chronic disease in the twentiethcentury: a history. Baltimore, Maryland: John Hopkins University Press.

Wool, Z. H. andLivingston, J. (2017). Collateral Afterworlds: An Introduction. Social Text 35(1), 1-15.

Wright,F. (2022). Making good of crisis: Temporalities of Care in UK Mental Health
Services. Medical Anthropology 41(3),315-328.

Long Covid in Children: A Human Rights Perspective

Dr. Dr Vivek Bhatt Clinical Assistant Professor of International and Comparative Law, NYU Liberal Studies

This talk will explore the implications of Long Covid for children's rights as recognised in key international documents including the UN Convention on the Rights of the Child. Children's rights, including the right to education, were severely impacted by the Covid-19 pandemic, and they have largely been deprioritized in policy responses to Long Covid. Focusing on the United Kingdom, the talk will show that Long Covid is widespread among children and has serious mental and physical implications, sometimes impairing children's ability to go about their day-to-day lives. The talk will thus explore the implications of Long Covid for children's rights including the right to education; the right to a standard of living adequate for spiritual, mental, physical, and social development; and non-discrimination. Finally, the talk will explore states' obligations to respond to Long Covid among children, which include the continuation of rigorous scientific research into the condition, availability of treatment and rehabilitation services on a non-discriminatory basis, and reasonable accommodation of the needs of school students suffering from Long Covid.

The Loss of the Presumed World: Phenomenology of Smell Loss in Long COVID

Dr. Pedro Pricladnitzky

The phenomenon of smell loss, or anosmia, has emerged as a significant and persistent
symptom for many individuals suffering from long COVID. This condition profoundly
impacts various aspects of life, including nutrition, safety, and emotional well-being.
Qualitative studies (for instance, Sharetts, Moein, Khan, Doty; 2024) involving
interviews with individuals experiencing long-term smell loss post-COVID-19 have
highlighted several key themes, revealing the extensive effects on their daily lives.
Participants have reported that the loss of smell disrupts their nutrition and appetite,
complicates personal hygiene, poses safety risks, and affects their emotional health.
Despite attempts at treatment with corticosteroids and olfactory training, many have
found these interventions ineffective. This research underscores the need for greater
attention to the psychological, emotional, and social implications of prolonged smell loss,
which were often overlooked during the pandemic. The concept of "the loss of the
presumed world" refers to the profound and often disturbing impact of losing a
fundamental sense like smell. This loss can dramatically alter how we experience and
understand reality, affecting not only our ability to enjoy sensory experiences but also our
identity and emotional well-being (Barwich 2020; Smith 2022). Smell, often
undervalued, plays a crucial role in interpreting flavors and perceiving the environment
around us. When this sense is lost, familiar tastes become unrecognizable, and the
pleasure derived from food and drink diminishes. Beyond the sensory impact, the loss of
smell can have significant psychological effects, leading to feelings of disorientation and
detachment from the familiar world. Phenomenologically, the different modalities of
smell loss—such as anosmia (total loss), hyposmia (partial loss), parosmia (smell
distortion), and phantosmia (smell hallucination)—highlight the complexities involved in
the loss and the challenging path toward recovery. This shift affects not only sensory
experiences but also our relationships and sense of self. The disruption caused by anosmia
and variants reflects a break in our daily experience and our understanding of ourselves
within the context of the world around us. The significance of smell extends beyond its
role as a sensory experience. Often described as a "poor cousin" among the senses, it
functions as a vital health sentinel and plays a crucial role in evolutionary biology and
cultural constructions. The experience of losing this sense, poignantly illustrated in
literary passages such as the 'Proustian moment,' reveals how deeply sensory stimulation
is intertwined with memory and emotion. Marcel Proust’s exploration of this connection
highlights the extraordinary nature of sensory experiences and underscores the profound
impact of their loss. The intricate nature of smell loss due to long COVID necessitates a
deeper exploration of its underlying mechanisms, potential treatments, and the emotional
and psychological toll it takes. Continued research and patient-centered approaches are
essential to develop effective interventions and support for those affected by this
condition.
Keywords: Smell loss; Covid; Phenomenology.

Round Table: Ways Forward for the Academic Community and Beyond

Speakers: Dr. Alice Fleerackers (UvA), Guus Liebrand (Niet Hersteld), Prof. dr. Moniek Buijzen (EUR), Feminists Against Ableism.

In this last session we discuss how we can move to more just societies for folks with long covid and other postviral conditions, at the crossroads of science and society.

Speaker/contributor biographies

Dr. Alice Fleerackers (UvA) is Assistant Professor of Journalism and Civic Engagement in the Department of Media Studies at the University of Amsterdam. Her research examines the intersections of journalism, health and science communication, and scholarly communication. She is a member of the Amsterdam School for CulturalAnalysis and the Taal en Cultuur sector plan programme. Beyond her work at UvA, Alice is also an (occasional) freelance writer, researcherat the ScholCommLab, Vice Presidentof the Public Communication of Science andTechnology Network (PCST), and co-founder and co-chair of PCST’sDiversity, Equity, Inclusion, and Accessibility Committee.

Guus Liebrand (Niet Hersteld): I am a creative who, because of falling ill myself, has become a patient/disability advocate and activist. Together with a group of other patients I am currently working on #NietHersteld. We are an advocacy and activist group thataims to raise more awareness for Long Covid and other Infection Associated Chronic Conditions like ME/CFS, Lyme and Q-koorts as well as demanding more action for the cause. We try to do this in various ways e.g. a photo campaign and podcast.

Prof. dr. Moniek Buijzen is Erasmus University Professor ofCommunication and Change, with a current focus on the integration of AI in society. She is the academic lead of the MovezNetwork, the Erasmus Initiative Societal Impact of AI (AiPact)and the health sector of the nationwide 10-year programme Public Values in the
Algorithmic Society (AlgoSoc). Buijzen(1973) received her doctorate at the University of Amsterdam in 2003, where she subsequently worked as an assistant and associate professor. From 2012 to 2019, she was professor and chair of the Communication Science department of Radboud University’s Behavioural Science Institute. She is one of the primary investigators in the large national 10-year gravitation program Public Values in the Algorithmic Society (AlgoSoc). In 2019 she received a prestigious personal Vici grant from the Dutch Research Council (NWO) for the 5-year research project 'SocialMovez: Effective and responsible health campaigns for adolescents using online social networks.' Buijzen had previously received an
NWO Veni (2003), a Vidi (2008), and a Consolidator Grant from the European Research Council (ERC). Her work has been recognised with awards from the International Communication Association, the International Conference on Research in Advertising, the Child and Teen Consumption Conference, and the Netherlands Flanders Communication Association. She is a honorary fellow of the International Communication Association and one of the two honorary Erasmus University Professors.

Feminists Against Ableism is an intersectional disability justice collective made up of disabled, chronically ill and neurodivergent feminists. We fight against ableism (the exclusion/discrimination of disabled people). From the collective, Judith de Hont and micah marissa will join the conversation.