Can one be ill and happy? I use a phenomenological approach to provide an answer to this question, using Merleau-Ponty’s distinction between the biological and the lived body. I begin by discussing the rift between the biological body and the ill person’s lived experience, which occurs in illness. The transparent and taken for granted biological body is problematised by illness, which exposes it as different from the lived experience of this body. I argue that because of this rift, the experience (...) of illness cannot be captured within a naturalistic view and propose to supplant this view with a phenomenological approach. The latter approach accounts for changes in the ill person’s relationship to her social and physical world. These changes, I argue, cannot be captured by a naturalistic perspective. I then propose the notion of health within illness as a useful concept for capturing the experience of well-being reported by some ill people. I present empirical evidence for this phenomenon and assess its philosophical significance. Finally, I suggest that adaptability and creativity are two common positive responses to illness, demonstrating that health within illness is possible. The three elements combined – the transformed body, health within illness and adaptability and creativity – serve as the basis for a positive answer to the question posed above. (shrink)

This paper by Miles Little and colleagues identified the state they described as “liminal” within the trajectory of cancer survivorship. Since that time the concept of liminality has provided a powerful model to explore some of the difficulties experienced by people with severe and chronic illness. In this commentary I consider the expanding application of liminality not just to a widening range of medical conditions but to the consequences of therapeutic interventions as well and how this expansion has enriched and (...) challenged its use as a conceptual tool. (shrink)

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. (...) In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation (such as chronic illness), and of alternative reflective practices within healthcare education that encourage engagement with both mind and body. (shrink)

In this paper I respond to Edward Harcourt’s suggestion that human excellences are structured in a way that allows us to see the multiplicity of life forms that can be instantiated by different groups of excellences. I accept this layered model, but suggest that Harcourt’s proposal is not pluralistic enough, and offer three critical points. First, true pluralism would need to take a life-cycle view, thus taking into account plurality within, as well as between, lives. Second, Harcourt’s pluralism still posits (...) physical health as a requirement for excellence, whereas I claim that the challenges of illness give more, not less, opportunity for excellence. Third, I make a more general claim that in certain salient cases it is precisely the absence of excellence that can facilitate virtue. (shrink)

When elderly people are ideating on manners to end their lives, because they feel life is over and no longer worth living, it is important to understand their lived experiences, thoughts and behaviour in order to appropriately align care, support and policy to the needs of these people. In the literature, the wish to die in elderly people is often understood from a medical, psychopathological paradigm, referred to as cognitive impairment, depressive disorder, pathological bereavement, and suicidality. In this paper, we (...) evaluate this dominant paradigm by considering three serious limitations, namely: (1) the risk of epistemic transformation; (2) the risk of reduction; and (3) the risk of obscuring the social and cultural embeddedness. Drawing on insights from our empirical–phenomenological research on the issue of elderly and the self-chosen death, this paper argues for a phenomenological perspective to counteract the medicalisation of death wishes in elderly people. (shrink)

This article examines the philosophical role of illness. It briefly surveys the philosophical role accorded to illness in the history of philosophy and explains why illness merits such a role. It suggests that illness modifies, and thus sheds light on, normal experience, revealing its ordinary and therefore overlooked structure. Illness also provides an opportunity for reflection by performing a kind of suspension (epoché) of previously held beliefs, including tacit beliefs. The article argues that these characteristics warrant a philosophical role for (...) illness. While the performance of most philosophical procedures is volitional and theoretical, however, illness is uninvited and threatening, throwing the ill person into anxiety and uncertainty. As such it can be viewed as a radical philosophical motivation that can profoundly alter our outlook. The article suggests that illness can change the ways in which we philosophise: it may shape philosophical methods and concerns and change one's sense of salience and conception of philosophy. (shrink)

This paper explores the relationship between temporal continuity in nursing and temporal features of sickness. It is based on phenomenological and hermeneutical philosophy, empirical studies of sickness time, and the nursing theories of Nightingale, of Benner and of Benner and Wrubel. In the first part, temporal continuity is defined as distinct from interpersonal continuity. Tensions between temporal continuity and discontinuity are discussed in the contexts of care management, of conceptualisations of disease and of time itself. Temporal limitations to the methodological (...) concept of situation are discussed. The main part of this paper explores nurses' possibilities to relate to their patients' time, and how temporal features of sickness may warrant temporal continuity of nursing. Three temporal characteristics of sickness are discussed: the immediacy of patients' suffering, the basic continuity of life through sickness and health care, and the indeterminism and precariousness of sickness. The timing of nursing acts is discussed. The paper explores how sickness is both part of the continuity of life, and threatens this continuity. It concludes that this tension is implicitly recognised in the temporal continuity of nursing, which allows for discontinuous and continuous aspects of sickness time. Nurses accordingly perceive the sick person's time at several levels of temporality, and distinguish highly complex temporal processes in their patients' trajectory. Temporal continuity provides the time, flexibility, and closeness for nurses to perceive and act into time dimensions of individual sickness. The paper shows that temporal continuity of nursing is grounded in temporal characteristics of severe sickness. It suggests that temporal continuity is an important theoretical concept in nursing. (shrink)

BackgroundThe evaluation of pain remains one of the most difficult challenges that healthcare practitioners face. Chronic pain appears to affect more than 35% of the population in the West, and indeed, pain is the most common reason patients seek medical care. Despite its ubiquity, studies in the last decades reveal that many patients feel their pain is dismissed by healthcare practitioners and that, as a result, they are denied proper medical care. Buchman, Ho, and Goldberg (J Bioethic Inq 14:31-42, 2017) (...) point to this phenomenon as a form of “epistemic injustice”: an unfair and harmful downgrading of credibility affecting some individuals and groups, which prevents them from receiving appropriate and beneficial medical care.MethodsBy exploring the existing literature on this downgrading of patients’ credibility written by healthcare professionals and scholars in medical humanities, I identify and examine the reasons patients are often not believed about their pain and why healthcare is too-often unhelpful or hurtful to people presenting with chronic pain. I also explore to what extent it is possible to forge an alternative epistemological model.ResultsI suggest that most of the causes of this downgrading of patient’s credibility result from either the difficulty in communicating pain or the widespread belief that pathology is always the result of objective tissue damage. I examine whether pain has to be effectively communicated and have an objective cause in order for it to be deemed credible. In the end, I argue that in the case of pain, both communication and objectivity are highly problematic.ConclusionsI conclude by suggesting that, although alternative epistemological models might be impossible to build, believing patients has both moral and clinical benefits, and this warrants further research. (shrink)

The aim of this study was to gain a deeper understanding of the experience of time when living with severe incurable disease. A phenomenological and philosophical approach of description and deciphering were used. In our modern health care system there is an on-going focus on utilizing and recording the use of time, but less focus on the patient’s experience of time, which highlights the need to explore the patients’ experiences, particularly when life is vulnerable and time is limited. The empirical (...) data consisted of 26 open-ended interviews with 23 participants receiving palliative care at home, in hospital or in a nursing home in Norway. The theoretical frameworks used are mainly based upon K. Martinsens philosophy of care, K. E. Løgstrup phenomenological philosophy, in addition to C. Saunders’ hospice philosophy, L. Feigenberg’s thanatology and U. Qvarnström’s research exploring patient’s reactions to impending death. Experience of time is described as being a movement that moves the individual towards death in the field of opposites, and deciphered to be a universal, but a typical and unique experience emerging through three integrated levels: Sense of time; where time is described as a movement that is proceeding at varying speeds. Relate totime; where the awareness of limited life changes the understanding of time to be more existential. Being in time; where limited time seems to clarify the basic living conditions and phenomena of life. The existence of life when the prospect of death is present is characterized by emotional swings that move within polarizing dimensions which is reflected in the experience of time illustrated as the moves of the pendulum in a grandfather clock. The diversity of the experience of time is oscillating between going fast or slow, being busy or calm, being unpredictable but predictable, safe or unsafe and between being good or bad, depending on the embodied situation of the individual. (shrink)

The concepts of health and disease are crucial in defining the aim and the limits of modern medicine. Accordingly it is important to understand them and their relationship. However, there appears to be a discrepancy between scholars in philosophy of medicine and health care professionals with regard to these concepts. This article investigates health care professionals’ concepts of health and disease and the relationship between them. In order to do so, four different models are described and analyzed: the ideal model, (...) the holistic model, the medical model and the disjunctive model. The analysis reveals that each model has its pros and cons, and that health care professionals appear to apply more than one models. Furthermore, the models and the way health care professionals’ use them may be helpful for scholars in philosophy of medicine with regard to developing theories and communicating them to health care professionals. (shrink)

In this paper I explore the various meanings of embodiment from a patient’s perspective. Resorting to phenomenology of health and medicine, I take the idea of ‘lived experience’ as starting point. On the basis of an analysis of phenomenology’s call for bracketing the natural attitude and its reduction to the transcendental, I will explain, however, that in medical phenomenological literature ‘lived experience’ is commonly one-sidedly interpreted. In my paper, I clarify in what way the idea of ‘lived experience’ should be (...) revisited and, subsequently, what this reconsideration means for phenomenological research on embodiment in health and medicine. The insight that the body is a condition of possibility for world-disclosing yet, at the same time, itself conditioned by this world forces us to not only zoom in on the body’s subject-side, but also on its object-side. I argue that in order to render account for this double body ontology, phenomenology should include empirical sociological analyses as well. I thus argue in favor of the idea of a socio-phenomenology. Drawing on material from my own research project on embodied self-experiences after breast surgery, I show how this approach can be fruitful in interpreting the impact of disfigurements on a person’s embodied agency, or a person’s ‘I can’. (shrink)

In this article, I propose that illness is philosophically revealing and can be used to explore human experience. I suggest that illness is a limit case of embodied experience. By pushing embodied experience to its limit, illness sheds light on normal experience, revealing its ordinary and thus overlooked structure. Illness produces a distancing effect, which allows us to observe normal human behavior and cognition via their pathological counterpart. I suggest that these characteristics warrant illness a philosophical role that has not (...) been articulated. Illness can be used as a philosophical tool for the study of normally tacit aspects of human existence. I argue that illness itself can be integral to philosophical method, insofar as it facilitates a distancing from everyday practices. This method relies on pathological or limit cases to illuminate normally overlooked aspects of human perception and action. I offer Merleau-Ponty’s analysis of the case of Schneider as an example of this method. (shrink)

In his influential theory of health Nordenfelt bases the concepts of health and illness on the notions of ability and disability. A premise for this is that ability and disability provide a more promising, adequate, and useful basis than well-being and suffering. Nordenfelt uses coma and manic episodes as paradigm cases to show that this is so. Do these paradigm cases (and thus the premise) hold? What consequences does it have for the theory of health and illness if it they (...) do not? These are the key questions in this article, which first presents the relationship between pain and disability in Nordenfelt’s theory and the paradigm cases he uses to argue for the primacy of disability over pain. Then, Nordenfelt’s concepts of illness are outlined, highlighting its presumptions and arguments. The main point is that if you do not have an action-theoretical perspective, it is not obvious that disability is the core concept for illness. The compelling effect of the paradigm cases presupposes that you see ability as the primary issue. To those who do not share this presumption, people in coma may not be ill. There are alternative well founded arguments for the primacy of first person experiences for the concept of illness. Hence, we need better arguments for the primacy of disability over first person experiences in illness, or first-person experience should be more primarily included in the concept of illness. (shrink)

O artigo pretende formular cinco leis essenciais que possam servir para caracterizar a temporalidade imanente peculiar da dor física. As três primeiras leis são comuns a inúmeras experiências de consciência: natureza cursiva da dor, ou não instantaneidade do fenómeno; natureza atual da dor, no sentido em que o decurso anterior de retenção não é adicionado de forma cumulativa à impressão de sofrimento; caráter mutável de todo processo doloroso, que nunca pára. A quarta lei refere-‑se a como o presente doloroso não (...) se integra ao seu próprio passado numa manifestação coerente, mas resulta num longo agora que flui desajeitadamente, ora estagnando sobre si mesmo ora excitando ou persistindo. A dor não carece de uma “figura de tempo”, mas decompõem-‑na a todo o momento e é essencialmente arrítmica. A quinta lei assume uma contingência particular na duração efetiva da dor, que pode ser de curta duração, breve ou interminável. As duas últimas leis, profundamente “antimusicais”, permitem falar de uma temporalidade amorfa do sofrimento. (shrink)

In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss of (...) mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders. (shrink)

This contribution intends to explore patients’ lived experience, with a focus on the temporal dimension. On the basis of a qualitative study that led me to interview persons with Parkinson’s disease (PD), caregivers, and medical professionals, I develop an empirical and philosophical investigation of the temporalities surrounding the implementation of deep brain stimulation (DBS) in Greece. I raise the issue of access to DBS medical care, and show how distinct temporalities are implied when the patients face such a matter: that (...) of linear time, linked with the medical discourse, the bureaucratic time linked to administrative and financial hurdles in the implementation and maintenance of DBS, and the technological time of the body/technology fusion. I consider initially the impact of technology and health care settings on the lived experience of patients and the enactment of multiple bodies which are interrelated with the social world. I then expand my analysis in order to show that this experience cannot be a solipsistic one, or specific to one physician/patient relationship. It is fully socially shaped. (shrink)

In this paper, we discuss “the slow in the fast” related to care situations in a “fast-track” hospital setting were the length of patients’ stay has been reduced significantly. The discussion is based on a narrative created from observations made in a postoperative care unit where patients are intensively observed and cared for during a very short time span. We found that within the phenomenological notions of lived time, lived space and lived illness, it is possible to create an imaginative (...) space in time – to make a time warp. Despite being in a setting where the objective time measure dominates, the nurse can create a rhythm of her own in the room. Thus, acting slow in the quick meeting means that nurse-patient relationship is characterized by calmness and quietness, the nurse’s engagement in the patient’s suffering and her help to the patient to endure the present and hold the now. (shrink)

This article studies the phenomenology of chronic illness in light of phenomenology’s insights into ecstatic temporality and freedom. It shows how a chronic illness can, in lived experience, manifest itself as a disturbance of our usual relation to ecstatic temporality and thence as a disturbance of freedom. This suggests that ecstatic temporality is related to another sort of time—“provisional time”—that is in turn rooted in the body. The article draws on Merleau-Ponty’s Phenomenology of Perception and Heidegger’s Being and Time , (...) shedding light on the latter’s concept of ecstatic temporality. It also discusses implications for self-management of chronic illness, especially in children. (shrink)

A research community must share assumptions, such as about accepted knowledge, appropriate research practices, and good evidence. However, community members also hold some divergent assumptions, which they—and we, as analysts of science—tend to overlook. Communities with different assumed values, knowledge, and goals must negotiate to achieve compromises that make their conflicting goals complementary. This negotiation guards against the extremes of each group’s desired outcomes, which, if achieved, would make other groups’ goals impossible. I argue that this diversity, as a form (...) of value pluralism, regularly influences scientific practice and can make scientific evidence and knowledge more useful and more reliable. As an example, I examine vertebrate paleontology laboratories, which house a variety of workers with different training and priorities, particularly about the meaning of time. Specifically, scientists want to study fully prepared fossils immediately, conservators want to preserve fossils for future use, and preparators mediate between the other groups’ conflicting goals. After all, one cannot study a fossil encased in rock, and one cannot remove that rock without removing information from that specimen. In response, these coworkers articulate their assumptions in everyday deliberations about how scientific evidence should be made and used. I argue that this exchange of assumptions is crucial for a research community to achieve mutually beneficial compromises that benefit current and future knowledge construction. (shrink)

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)