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.

Reading Adam Smith as an antidote to the long covid misery

Dr. Ecem Okan, Associate Professor, University of Lorraine (IDEA)

“As sickness is the greatest misery, so thegreatest misery of sickness is solitude” John Donne, Devotions, 1624.

Suffering from long covid+ entails above allsuffering from loneliness. As John Donne, among others, suggested, more than the illness itself it is the loneliness resulting from the illness that causes the most pain. Why is this so? Are we, the uncertainly disabled, doomed to misery? Adam Smith’s account of human nature in his Theory of Moral Sentiments (1759, 1790) offers important insightsinto the operations of the individual human mind and human sociability, analysis of which is crucial in our post-covid societies which have witnessed a proliferation of its “dependent”, “surplus” population.

As Smith observes, we all desperately want toshare our feelings and be understood. But we especially need to share our painful emotions. Recognizing the correspondence of our feelings of grief with the sympathetic feelings of a spectator alleviates our pain and helps us cope with the challenges of life. Yet, our capacity for sharing fellow-feeling with others, what Smith calls sympathy, is limited. As we can not directly experience the feelings of another, we have to use our imagination to conceive what others are feeling. We project what it would be like to experience the situation of others and then imagine how we would emotionally respond to their situation. Our capacity for sympathy is then limited by our past experience, our knowledge of other’s situation and the extent of our imagination. Therefore, the more distance there is, in any form, between one person and another, the more difficult is the correspondence of sentiments. We naturally sympathize more easily with our family, friends, neighbors, fellow citizens compared to strangers, especially because we know much better about them.

The first implication of a Smithian analysisfor our chronically ill academic community is the naturalness of our solidarity. As sufferers of the more or less same health conditions in similar work environments, we are spontaneously the best supporters of each other. This is the first reason why the initiative of “the long covid+ conversations” is more then welcome. Secondly, and more importantly, we should together reach out to the outer circle of the academic community, and ideally to a larger public audience, not only for our right to care but also for all the other members’ of the so-called surplus population in our rapidly aging societies. The need for expressing ourselves and for creating narratives of our experiences is evident: in order to acquire the sympathy of others we have to make ourselves known and explain what we are going through. And Smith could offer insights into the manner in which we could convey others into our experience.

From a Smithian perspective, a morally goodperson has the ability to see the world from other persons’ points of view and to draw appropriate moral judgments based on such understanding. Having the habit of seeing themselves through the eyes of others, a morally good person is guided by what Smith calls their “impartial spectator”, namely the moral judge upon whom we all depend for our capacity to keep our personal concerns in
perspective. While we cannot expect people to be categorically good, we could communicate them in such a way as to ease their imaginative entry to our situation and encourage them to adopt the perspective of their impartial spectator. For instance, rather than attempting to explain them our bodily pain, the bulk of which are unprecedented sensations hence our lack of vocabulary, we could describe them our emotions with intimacy and poignancy: in the tragedy of Philoctetes, Smith observes that what excites us is not the pain of the foot but his solitude because imagining and sympathizing with physical suffering is harder than entering into Philoctetes’s loneliness when he is unable to share his pain with anyone else.

Building on Smith’s key moral concepts, andnumerous illustrative examples of moral characters and behaviors, this presentation will explore ways in which Smith’s thought can help us better understand ourselves and others thereby providing us hope and even remedies in living with our debilitating health condition.

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.