"Suffering, Ineffability and Radical Bodily Doubt": An essay by Havi Carel (Keywords: Phenomenology;Embodiment;Transformative Experience;Epistemic Injustice;Vulnerability)

From The Philosopher, vol. 113, no. 2 ("Crossing the Floods")

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I. Effability problem

Suffering comes in many forms. When it is ours, it cannot be ignored, although we often find it hard or even impossible to talk about it. When it comes to the suffering of others, our poverty of expression, imagination and memory often restricts our understanding of it. On the one hand, it is not always possible for us to express, or even make sense of, our own suffering; and on the other, features of contemporary culture and human psychology make it difficult to communicate suffering and hence understand the suffering of others. I call this the ‘effability problem’ and there are three reasons behind it.

First, there are cultural restrictions on what we can say: many contemporary cultures espouse a bias towards ‘bright-siding’, a positivity-infused attitude admonishing us to ‘smile or die’, as Barbara Ehrenreich’s book title suggests. There is also a lack or misapplication of words, concepts, and interpretive resources for articulating suffering. We often say ‘we have no words’ to describe our suffering or to acknowledge the suffering of others, such as bereavement, and this is a culturally accepted way of expressing our linguistic trouble with suffering. Thus, we often find ourselves in a double predicament: our attempts to articulate suffering are not only blocked by a culture suffused with ‘positivity’, but we also lack the relevant interpretive resources fit for the task.

Second, our imagination – often fuelled by a blissful ignorance of illness, bereavement, grief, mental illness, and bodily suffering – is unable to fully furnish a picture of what such experiences are like. Attempts such as the ones seen in mainstream media often fall woefully short: they offer beatific portrayals of death as ‘falling asleep’, omit the harsh realities of bodily dysfunction, and gloss over the hardships and trade-offs of almost any medical treatment. Finally, our memory is notoriously fickle. When we try to remember what it felt like for us, for example, when we were ill, we find that both the details and the quality of this suffering have escaped our minds.

We therefore inhabit a social reality that is culturally and psychologically preloaded with talk of ‘positive attitudes’, ‘resilience’ and ‘making the best of it’ when we actually want to share opposite experiences of breakdown, mental chaos, and despair. To be able to talk about suffering, articulate it, and develop a shared account of it, we need to overcome these obstacles. This set of problems applies to many, if not all, kinds of suffering. In this essay, I focus on one type of suffering, namely illness, that I take to be a paradigmatic and hyper-intimate kind of suffering. It is infused within our bodies and sense of self and is both inescapable and universal. And I use phenomenology – a philosophical approach that focuses on embodiment and considers first-person human experiences as crucial to creating a full picture of human life that has meaning, structure and value – to describe and analyse these illness experiences.

II. Illness and phenomenology

The drive to overcome the cultural, interpersonal, and psychological barriers for expressing our suffering motivates the phenomenological approach to the study of illness. Phenomenology gives us concepts and tools with which we can order and discern experiences that are by their nature chaotic and difficult to speak of. It also provides a conceptual space within which such labour can be attempted. To take only one example, Martin Heidegger’s notion of being-in-the-world, as developed in his Being and Time (1927), enables us to view illness as a profound phenomenon with far more existential import than a narrow biomedical view focusing on biological dysfunction. It reveals how illness modifies both the being and the world of the ill person. It allows us to see that illness transforms not just an individual body, but this body’s complex relationships to its environment, other people, to space and time, and to its bearer’s agency and subjectivity.

Our attempts to articulate suffering are not only blocked by a culture suffused with ‘positivity’, but we also lack the relevant interpretive resources fit for the task.

I develop a framework for understanding illness experiences in my book Illness (2018) which uses phenomenological concepts such as Heidegger’s being-in-the-world and care, Jean-Paul Sartre’s analysis of health as transparent, and Maurice Merleau-Ponty’s notion of the body-subject so as to build a full picture of illness as it is lived. The foundational claim of this framework is that illness changes – often profoundly – not only the type of experiences we have, but also the experiential framing within which we have experiences altogether. For example, our sense of space and time fundamentally changes when we become incapacitated or disabled by illness, or when our life prospects diminish. Our attitudes and values also shift in light of diminishing choices and resources. Perhaps what was once critical to one’s self-image (e.g. good looks) becomes laughably insignificant. A complete revision of what one considers desirable, acceptable, and liveable often accompanies disease progression. In other words, illness is a transformative experience that changes the ill person both epistemically (what they know) and personally (what they value).

Illness also alters the ill person’s body and their embodied self: perception, gestures, bodily habits, and how they engage with the world. This includes ‘the geography of illness’, in which spaces and places become hostile or difficult to reach and navigate, and ‘the social architecture of illness’, in which the ill person’s social world is buffeted and damaged by the squall of stigma and what Ian James Kidd calls ‘pathophobic attitudes’ such as callousness, prurience, and insensitivity. Others have described illness as a series of losses (Kay Toombs), a feeling of homelessness (Fredrik Svenaeus) and a dys-appearance (Drew Leder).

The critical challenge for philosophy is to offer concepts and methods to help make sense of these illness experiences. This sense-making is critical for the ill person. It is essential for their ability to cope with and survive illness, and perhaps even flourish within the confines of chronic illness. A large and growing number of people around the world live with chronic conditions today and learning to live well with them has never been more important.

Our challenge is thus two-fold. First, how can we fully grasp what the experience of illness is like for the ill person and their family? How can we use philosophy to offer conceptual clarity and lucidity to experiences that are otherwise chaotic, confusing and life-destroying? And second, how can we share illness experiences in a way that is productive and edifying for the ill person and those who care for them? Phenomenology and philosophy more generally offer uniquely useful ways of answering these questions.

One way to begin chipping away at the chaos of illness and the effability problem is by developing fertile philosophical accounts of suffering, rich in detail and conceptually nuanced. We need to look beyond illness narratives in the form of memoirs and literary accounts, or patient accounts or complaints. Moreover, such accounts need to be philosophically analysed to distil their meanings and structures. And this is precisely what I attempt in the book: subjecting standalone accounts to systematic analysis and weaving personal experiences into a general philosophical account of illness that reveals broader themes of transformation, existential struggle, and the possibility of edification, alongside other themes such as wellness within illness, epistemic injustices operating in healthcare contexts, pathophobic attitudes, and the continuous yet hidden suffering of ill persons.

Illness changes – often profoundly – not only the type of experiences we have, but also the experiential framing within which we have experiences altogether.

A few things to note here. First, the effability problem does not merely arise due to a lack of words or paucity of illness accounts, but due to the incompleteness of such accounts: what they leave unsaid as well as their lack of depth and authenticity. It may be that words are available but are dismissed in epistemically unjust ways. It may be that some aspects of an illness can be shared but others not, due to stigma, conversational and aesthetic norms, or shame. And it could be that some aspects of illness are sharable, while others have to be experienced in order to fully understand them. In this sense, illness is a transformative experience as described by L. A. Paul: an experience you must undergo yourself to understand what it is like.

Second, to develop my philosophical account of illness, I draw on a wealth of varied resources, including first person accounts, public inquiries in cases of institutional failings (such as the Mid-Staffordshire review), pathographies and memoirs, literary and cinematic depictions, qualitative health research, archival historical material, and reports taken from organisations such as the Patients Association and the Care Quality Commission. There isn’t one experience of illness nor one source of accounts and testimonies. This richness of sources and experiences sits at the core of a phenomenological account that aims to capture the shared features of illness whilst retaining the connection to the personal and the idiosyncratic.

Finally, the philosophical study of illness does not focus on physiological dysfunction (which is the target of medical intervention) but on existential change. This is another reason why philosophy, particularly phenomenology, is well-suited for this task. In the next section, I present one such philosophical analysis of illness. This analysis suggests that the transition from wellness to illness is driven by a special kind of doubt, which I call bodily doubt.

III. Bodily doubt

In many somatic and mental disorders, the sense of certainty and confidence we have in our own bodies is deeply disturbed. What was previously taken for granted – that my legs can carry me, that my lungs can support my body’s oxygen requirements – is acutely thrown into question. Such cases of illness disturb not only the bodily feeling of confidence, familiarity, and continuity, but also a host of assumptions that hang on it. For example, one’s plans depend on bodily capacities and thus are limited by ill health. One’s temporal sense is radically changed by a poor prognosis. One’s values and sense of what is important in life are frequently modified in the light of illness. One’s existence, more generally, is impacted by ill health.

Illness is a transformative experience that changes the ill person both epistemically (what they know) and personally (what they value).

Bodily doubt is not just a disruption of belief, but a disturbance at a bodily level. It is a disruption of one’s fundamental sense of being in the world. Such doubt gives rise to an experience of unreality, estrangement, and detachment from oneself. The natural confidence in our bodily abilities is displaced by a feeling of helplessness, alarm, and distrust. From comfortably inhabiting a familiar world, the ill person is thrown into a world of uncertainty and anxiety. Her attention is withdrawn from the world and focused on her ill body. She may feel acutely isolated from others and even become detached from her physical and social environments.

Bodily doubt is philosophically revealing in several ways. Its unpredictability makes it more threatening and us less capable of incorporating it into our familiar world. It invades our normal sense of things and accentuates the sense of ordinariness that normally goes unnoticed but is now lost. In this respect, bodily doubt is different from normal bodily failure, such as slipping on the street or feeling too exhausted to attend a party. Bodily doubt throws one out of immersion and into suspension, and the familiar world is replaced by an uncanny one.

Bodily doubt also reveals the extent of our vulnerability. Once experienced, it leads to a loss of certainty that has hitherto never been disturbed. In fact, the possibility of it being disturbed has never been countenanced. In this sense, it is similar to other kinds of suffering that overthrow our basic assumptions about the regularity, predictability, and benevolence of the world. J.M. Bernstein describes such experiences as ‘revealing underlying and intractable dimensions of vulnerability, dependence, and potential helplessness that are normally hidden from consciousness.’ Moreover, bodily doubt reveals our vulnerability of a specifically bodily kind. Once experienced, the possibility of catastrophic bodily failure is always on one’s horizon.

Bodily doubt makes the person experiencing it feel rather incapable. Confronting the loss of abilities and the frustration involved in ‘being unable’ (‘I cannot’) can be sharply contrasted with the normal (well) feelings of competence and ability, even when this ability is punctuated by occasional failure. For example, if I decide to go for a walk, I know I cannot walk indefinitely, but I have enough bodily certainty such that the project (going for a walk) dominates the action. I walk until I am satisfied, so in effect, I have walked without any limit. But in a state of bodily doubt, I am immediately restricted by my bodily limits. Thus, I must plan before I act (how far I can go? will it be too steep?) such that my bodily limits (and not the project) determine the action. The sense of my open horizons, as extending beyond myself and into the world, collapses back onto my actual physical being. In this way, bodily doubt exposes the structure of how things actually are and is hence philosophically revealing.

Bodily doubt also reveals the extent of our vulnerability. Once experienced, it leads to a loss of certainty that has hitherto never been disturbed.

Bodily doubt pierces the normal sense of bodily continuity, transparency and faith in a way that highlights their contingency. Let’s look at each in turn.

a) Loss of continuity: Human cognition and action are characterised by continuity of experience and purposeful action. In bodily doubt, this continuity is lost, resulting in a suspension of normal action and a modified awareness of self and environment. Everyday habits become the object of explicit attention and conscious effort. In this situation, one is unable to pursue their goals because the normal flow of actions leading to the goals is disturbed. Minor tasks require planning and attention to detail, including contingency plans. The doubt is a constant reminder of the contingency and fallibility of the original continuity.

b) Loss of transparency: The healthy body has been characterised by Jean-Paul Sartre as transparent, something we experience the world through rather than it being a focus of attention. Drew Leder suggests that the body is an ‘abiding and inescapable presence in our lives’ but also ‘rarely the thematic object of experience’. As Merleau-Ponty says in Phenomenology of Perception, we intend towards the world through our body, which is our ‘medium for having a world’, whilst the body itself remains in the background. When the interaction between us and the world is smooth, there is little need for conscious attention. Illness, in contrast, creates areas of dramatic resistance between body and environment, such that the body is inevitably foregrounded.

c) Loss of faith in one’s body: This pertains to the breakdown of a tacit set of beliefs we hold about our bodies. These beliefs support everyday actions as well as more specialised goals and projects. Whatever the action, it is hard to carry it out in the context of doubt. Not being sure one can complete a routine task leaves one in a state of turmoil, which damages the implicit certainties that underpin everyday life. In that sense, it is an experience of vulnerability, hesitation, and doubt experienced on a bodily level.

IV. Radical bodily doubt

With this account of bodily doubt in place, I now turn to a subspecies of it: radical bodily doubt. This is conceptually and experientially more extreme. It is emblematic of liminal situations such as being in intensive care, or at the end of life, in which bodily doubt hardens into the certainty of incapacitation. What we encounter in critical illness is not bodily doubt, but a certainty of bodily collapse: bodily abilities are altogether gone. In radical bodily doubt, the ill person experiences a destruction – partial or complete – of their embodied agency. This attitude is no longer a doubt (‘Will I be able to do this?’) but a radical certainty (‘I am completely broken and unable to do this’).

So, why still characterize this as ‘doubt’? I use the term here to refer to a high-level, general doubt rather than localised doubts about specific bodily abilities. What remains in doubt is the general orientation we have towards our bodies as intelligible and predictable. Although bodily doubt becomes a form of bodily certainty (one loses something altogether rather than experiencing it as no longer dependable), this certainty also amounts to a non-localised form of doubt regarding everything else. A background sense of confidence or certainty that is integral to our relationship with the world is lost.

I distinguish doubt in a familiar sense from doubt as the complete or near-complete loss of the ability to take anything as certain, i.e. loss of the capacity for a certain kind of conviction. This is analogous to the distinction Wittgenstein makes in On Certainty between mundane certainties (the things we do not question) and a more basic sense of certainty that underlies our ability to feel certainty at all.

Now, what happens when bodily doubt becomes radical? The loss of continuity is now its complete breakdown; there is bodily chaos and the loss of the vantage point that anchors one in the world. The ill person is incapacitated, disoriented, and in pain. As a result, one’s bodily presentation collapses and what remains is not only a medicalised but a scientised body. As Dr. Matthew Broome, reflecting on a period working in intensive care, says, ‘subjectivity and patients almost drop away … it is sort of applied physiology.’

What we encounter in critical illness is not bodily doubt, but a certainty of bodily collapse: bodily abilities are altogether gone.

The loss of transparency becomes a complete barrier, ceasing all normal human exchange. The body is now entirely opaque because it has lost its transparency to the extent that it is no longer possible for it to even momentarily recede into the background while we focus our attention on something else. And the loss of faith in one’s body is replaced by a new certainty: the certainty of negation. The loss of faith does not result in doubt, but in the negation of possibility. This is the loss of all possibility to assert one’s agency, wants, or needs, all of which are (almost) entirely negated by the situation, because the radically ill person is entirely passive and reliant on others for all aspects of their existence.

This passivity is constituted by one’s physical state: ill people in intensive care can almost do nothing for themselves. Their ability to advocate for themselves is compromised; they often cannot speak or are unconscious. But it is also constituted interpersonally by those who look after the incapacitated person, not due to malice but simply in virtue of the situation. This passivity is baked into the interpersonal dynamics: the patients are mostly unconscious, disoriented, or unable to speak, which creates real physical and communicative barriers. Those who care for you play an important role in sustaining, restoring, or further eroding a sense of bodily subjectivity and agency. The ill person’s most basic agency, that of bodily location, is enabled or disabled by others. Bodily capacities are appropriated: patients in intensive care are fed via a nasogastric tube; their vital functions are supported and regulated externally. One risks being reduced to a passive, manipulable object before the clinical-other, not just for a moment but in an enduring way.

V. Conclusion

How does this account further our understanding of illness and of suffering more generally? A phenomenological analysis shows that embodiment is radically disrupted in illness and that this disruption is both global and existential, affecting all aspects of being in the world. A philosophical account of this world-disruption is crucial for understanding and articulating illness experiences, both within and beyond healthcare contexts. Finally, a phenomenology of illness also militates against a ‘bright-siding’ culture that shrinks the interpersonal spaces and communicative possibilities for talking about suffering, trauma, pain, and illness. Phenomenology, as a method for studying illness and tracking epistemic injustice in healthcare contexts, supports communicative efforts to jointly promote health justice, epistemic justice, and effability, such that we can speak of what are currently unspeakable experiences.

Acknowledgement

The writing of this article was generously supported by Wellcome. Grant: [226603/Z/22/Z], ‘EPIC: Epistemic Injustice in Health Care’.

Havi Carel is a Professor of Philosophy at the University of Bristol, working on philosophy of medicine, phenomenology, and death. She currently leads a Wellcome Discovery Award, EPIC, on epistemic injustice in health care. Havi is the author of Phenomenology of Illness (2016), Illness (2019, shortlisted for the Wellcome Trust Book Prize), and Life and Death in Freud and Heidegger (2006). She has published widely on the embodied experience of illness, epistemic injustice in health-care, vulnerability, wellbeing within illness, transformative experience, death, and on the experience of respiratory illness in medical and philosophy journals. She previously held a British Academy Mid-Career Fellowship, a Leverhulme Fellowship, and an AHRC award.

Further reading

• Havi Carel, Illness (Routledge, 2018)

• Drew Leder, The Absent Body (University of Chicago Press, 1990)

• Maurice Merleau-Ponty, Phenomenology of Perception. Translated by Colin Smith. (Routledge, 1962)

First published online on 7th June 2026

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