In the beginning is an interruption. Disease interrupts life, and illness then means living with the perpetual interruption.
— Arthur Frank, The Wounded Storyteller (p. 56)
Being seriously sick or having a life-altering major illness directly changes how we experience and inhabit the world. Illness not only has the capacity to shrink, or even destroy, one's world, but is palpably transformative. Its dramatic and overarching change to a person's corporeal existence is often profoundly violent as it transforms our very being in the world, including our relationship to the external environment, social and temporal structures, persons, things, and even our own identity.
In English, we "fall" ill. The metaphor is telling. Just as often we may speak of being "stricken with" or "suffer from" a serious disease. Yet even the comparatively more benign sense of falling presumes that we never step mindfully into illness. We don't wade, stroll, amble, or walk into illness—we fall, a verb that conveys illness's loss of control, potential for pain, and unknowable depth and futurity. All of this comes unbidden: for better or for worse, we are forever changed.
It is quite remarkable, then, that while being a matter of nearly universal concern that is woven into the landscape of physical and embodied life, illness—the lived experience of disease—has so far garnered little attention from serious attention from modern-day philosophers, particularly those in the "ivory towers." Incisive and insightful, Havi Carel's Phenomenology of Illness is thus a timely and important contribution to the growing literature highlighting the value and usefulness of philosophy to the experience and understanding of health and illness. It represents a sustained philosophical reflection on the experience and value of illness, or a philosophy of illness that explores the ethical, epistemological, and existential issues latent in the multifarious ways that human beings experience and engage with illness.
Anchored methodologically in the phenomenological tradition, Carel's aims "to contribute to the understanding of illness through the use of philosophy, and to demonstrate the importance of illness for philosophy" (p. 2). These bilateral and mutually illuminative objectives are not without precedent, as Carel refers to other philosophers—Maurice Merleau-Ponty, Jean-Paul Sartre, S. Kay Toombs, Drew Leder, Fredrik Svenaeus—all of whom have been influential in the establishment and legitimation of the philosophical study of illness. However, while their attention has mainly been concerned with specific features of illness, this publication is noteworthy for being the first monograph devoted to the philosophical enquiry of illness more generally. Indeed, Carel's expressed goal with this book "is to provide a comprehensive and coherent phenomenology of illness" (p. 2).
According to Carel, phenomenology provides the means through which illness can be used to "explore an individual life, its meaning, goals, and values and how best to modify them in response to illness" (p. 15). A distinct feature of phenomenological "methodology" is the description of the structure or forms of conscious experience rather than the object or content of conscious experience. Put another way, phenomenology, as a descriptive tool, expresses what we feel when we fall ill, rather than how we fall ill. By assessing the "lived experience" of illness rather than a discrete entity identified as "illness," a phenomenological approach is a genuinely non-judgmental descriptive tool that avoids making assuming about what the experience of illness may be like for any individual while also refusing to subsume any experience under a prescriptive formulation. As such, it offers an antidote against the naturalistic tendency for constructing singular and monolithic understandings and formulations of the deep phenomenon of disease and illness.
Before moving deeper into the chapters of the book, a couple points are worth highlighting. Carel is not interested in illness as an acute, short-term bodily disruption but rather illness as "a complete transformation of one's life that entails a set of radical disruptions to our typically tacit structures of experience, meaning, and possibility" (pp. 14-15). Relevant illness is therefore limited to "serious, chronic, and life-changing ill health, as opposed to a cold or a bout of tonsillitis" (p. 2).
Structurally and thematically, Phenomenology of Illness has nine chapters that fall roughly into two parts. The first five chapters are devoted to the phenomenology of illness: both developing a framework and putting it to use through a case example. There is a linear trajectory through this first half as subsequent chapters build upon previously introduced concepts and ideas to build a phenomenological framework that is eventually applied concretely. In the second half, Carel centers the remaining four chapters on the varied ethical and epistemological issues of illness that might affect our relationships to central the philosophical themes of well-being, justice, embodiment, time, and death.
In Chapter 1, Carel introduces phenomenology as a philosophical approach and makes the case for its specific utility in analyzing experiences of illness. Carel summarizes the contributions of phenomenology of Edmund Husserl, Merleau-Ponty, Martin Heidegger, and Jean-Paul Sartre that are used throughout the book, with particular attention to Husserl and Merleau-Ponty, both of whom developed a phenomenology of embodiment that centralized the body and perception as the seat of human existence or subjectivity.
Over the next three chapters, Carel builds and expands a proposed phenomenological framework which pivots around the five interrelated philosophical themes: Toombs's analysis of illness as series of five losses; the objective body and the body as lived introduced by Husserl and developed by Merleau-Ponty; Sartre's three orders of the body as objective, subjective, and intersubjective; Merleau-Ponty's and Drew Leder's notion of the healthy body as transparent and absent, respectively; and Heidegger's famous analysis of malfunctioning tools as applied to the ill body.
In particular, Chapter 4 elucidates how the line between the lived and objective, biological body that is normally invisible becomes salient in bodily doubt. We possess a kind of taken-for-granted certainty about the world and our bodies that normally becomes visible only when it is disturbed. For instance, we don't normally question if our legs will support us walking, if our eyes will perceive light when seeing, or if our mouth will swallow food when eating. But as soon as any of these actions becomes incongruent with our expectations, a certain feeling of doubt in/about our body becomes more prominent and can radically modify our lived experience. In Carel's words "Bodily doubt is not just a disruption of belief, but a disturbance on a bodily level. It is a disruption of one's most fundamental sense of being in the world" (p. 92). In illness, the world around us becomes less entertaining, less spontaneous, and can also completely disappear, while our body, normally absent, becomes more present than ever.
The first half of this book concludes in Chapter 5 with the application of Carel's formulates a preliminary phenomenology of breathlessness, applying the proposed framework to personal lived experience with lymphangioleiomyomatosis (LAM), a rare and life-limiting lung disease with a prognosis of about ten years from the onset of symptoms. It is through the depth and vividness of this case analysis that the reader can appreciate the importance of understanding illness through the use of philosophy through the realization that how we think of illness carries practical implications for how we treat and cope with it.
The second part commences in Chapter 6 with the provocative theme of whether well-being is possible within illness. Carel explores empirical evidence on the relationship between health and happiness to reveal that, contrary to widespread belief, finds that individuals experiencing illness and disability report well-being and quality of life on par with healthy counterparts. Carel offers several explanations for why this is, one of which is that long-term illness is often episodic and global in nature, characteristics which are not mutually exclusive. Illness is a theme that can envelope a person's whole life. But it can—and often does—recede into the background in a way that is unimaginable to a healthy outsider. Some traumatic experiences have good outcomes, and this is a hopeful and surprisingly finding that should be investigated philosophically. Illness is an edifying experience for some people. Illness is not an edifying or positive experience for others. Carel stresses that neither of these situations negate the seriousness or trauma associated with illness.
The discussion of well-being and possibilities for happiness seems to reach its limit with the topic of Chapter 7 on death. The first half of this chapter provides the background on the importance of death that makes more sense in the context of earlier parts of the book. However, the second half attempts to restructure Heidegger's definition of death in order to allow it to be de-individuated and allow a relational being towards death. The result is an abrupt shift in the approach of the book from one that is accessible to most readers to one that is dense and extremely difficult to understand for those who do not have requisite familiarity with Being and Time. My biggest critique of this text rests with the inclusion of this chapter which seems to be, at least at a technical level, far beyond the accessible nature of the rest of the book. Admittedly, with my limited but expanding philosophical background, I frequently felt lost in this analysis and skimming for the end.
Chapter 8 provides a powerful argument for the inclusion of applied phenomenology in medical and healthcare training and is a standout in this book. With the content of this chapter, originally published elsewhere in collaboration with Ian James Kidd, the authors endeavor to make a significant contribution to healthcare practice. Here they move onto a set of epistemological reasons for our inabilities to properly discuss and understand illness by invoking Miranda Fricker's concept of "epistemic injustice" which holds that professionals neither understand nor give weight to the lived experience of illness due specifically to judgements and harms done to the ill person specifically in their capacity as a knower. Epistemic injustice is shown to consist of attitudes that "lead interlocutors to treat ill persons' reports with unwarranted disbelief or dismissiveness" (p. 180). Those attitudes involve the clinician considering the patient to be "cognitively unreliable, emotionally compromised, or existentially unstable in ways that render their testimonies and interpretations suspect" (p. 182). To resolve this and bring the focus to bear on illness, the authors advocate a phenomenological toolkit as a "patient resource" that is also "aimed at training clinicians" (p.199). Subsequent work has expanded the range of forms and sources of epistemic injustice, particularly in psychiatric disorders (Crichton, Carel, and Kidd 2017).
In the ninth and final chapter. Carel outlines the distinctive insights afforded by "illness as a mode of philosophizing" (p. 213) through the changed way of being it brings about. The break with the habitual everyday way of being stands as a particular epoche through which the everyday can be understood (pp. 215-216). This "provides opportunities to uncover facets of existence that are normally not visible" (p. 216). In this way, illness can be both a tool to philosophize with and an object of philosophical investigation that can reveal an alternative perspective in the concepts we have developed within everyday experience of the world.
Critically reflecting on philosophical concepts and theorizing on illness, disability, and well-being, Carel artfully weaves into it a diversity of anecdote, autobiography, emotion, and first-person accounts into this philosophical framework for studying of illness phenomenologically. In doing so, this book achieves something rare among works of philosophy, perhaps especially among recent and contemporary works: it speaks with a heartfelt directness that instantly engenders an intimate connection between the author and reader. Carel writes with the kind of personal honesty rarely seen in philosophical work, and as a result her work blurs the boundary between the philosophical and the personal. As such, this book demands a level of personal engagement, both emotional and self-reflective, that is at times hard to bear.
What struck me most is the way Carel writes movingly of the impact of illness on her social world. With characteristic candidness, she writes "There are many terrible things about illness; the lack of empathy hurts the most" (p. 37). She observes that the sick body evokes fear, anxiety and even embarrassment in others as it lays bare our vulnerability to pain and death and exposes our intimately corporeal nature as the messy scene of deterioration and decay. After her diagnosis, Carel notes that "Many people found it hard to communicate with me. Some said they 'couldn't handle it'.... Only a handful of friendships were able to contain the blow" (p. 54). Friendships crumbled under the strain of the visible changes of her body, the transformation of her life trajectory and the likelihood of her early death. This is, unfortunately, not an unusual story. It reflects a general ambivalence towards illness in the Western world. Illness is taboo; Carel refers to it as her "dirty little secret" (p. 54).
I had a hard time separating my own first-hand illness experience from Carel's book and welcomed the invitation to philosophize about my own illness. When I was diagnosed with schizophrenia during my first year of grad school, I abruptly "fell" into its constellation of symptoms including auditory and visual hallucinations, delusions, and disorders in the realm of perception, sensation, cognition, and emotion, I felt my whole existence shift into a state of loss, limitation and liminality. Feelings of estrangement existed not only from others—family, friends, doctors—but also from one's own identity and sense of self. My world narrowed down to my bed and my window. As with all aspects of embodiment, illness is also caught up in the net of social, cultural, and political signifiers which give us the means to interpret and understand our lived experiences. Like many contested and psychiatric disorders, schizophrenia carries a huge stigma that envelopes all aspects of lived reality in profoundly unjust ways. Like Carel, I found the social exclusion to be the hardest consequence to bear. Most of the people around me stepped backwards. Conversations were awkward and halting. No one knows what to say. I've seen withdrawal on the part of many people, many old friends who just couldn't handle this disease comfortably and shielded away from contact as much as possible. It's as if there are suddenly two kinds of people: you and everyone else. You are in a different category from the normal population.
My own lived experience also had me questioning how or whether phenomenology can account for the illnesses of those that may mark them as "not fully human." I am thinking here not only of my own reality but also of people in suffering from disorders of consciousness where medical science cannot be certain to what extent a person is self-aware as well as people with severe cognitive disabilities. In Potentialities: Collected Essays on Philosophy, Giorgio Agamben (1999) contends that many categories of the philosophical tradition must be rethought or reconsidered, making room for "Life as contemplation without knowledge … that has freed itself of all cognition and intentionality" (p. 239). Since phenomenology, as a theory, is tied to intentionality, how can it be indicative of that which escapes intentionality? It seems in embracing it as a philosophical tool, it reflects how a lack of self-reflexivity and intentionality is taken-for-granted as an inferior and questionable existence. This is certainly not to disagree or criticize Carel's exceptional undertaking in this book. I'm far too much of a novice in this field to stake any authority but this is something that would be interesting to explore. Carel notes up front that this book is about somatic illness, not mental illness, however, the line between the two is very blurry, any many somatic illnesses can affect a person's perceived personhood in ways that generate the debate about their "quality of life" and burden in the lives of others. In other words, the stakes are high.
While it does not endeavor to be a manifesto, Phenomenology of Illness provides a compelling way forward in thinking through the complexities, ambiguities, and uncertainties of health and illness and disability. This is also a book that is eminently readable. While Carel is definitely issuing a call to arms for philosophers and healthcare professionals, this book is also clear and accessible enough for medical humanists, healthcare researchers and clinicians, those with a budding interest in philosophy and those experiencing, anticipating, or responding to illness. However, readers who lack a basic familiarity with or interest in phenomenological or philosophical concepts are unlikely to fully appreciate the robust analysis contained in this book. Since this text offers a fuller, more systematic account of the phenomenological description of lived experience in comparison to her earlier book, Illness: The Cry of the Flesh, I'd suggest that those without an interest in philosophy might find this earlier book more edifying.
Agamben, Giorgio. Potentialities: Collected Essays in Philosophy. Stanford, CA: Stanford University Press, 1999.
Carel, Havi. Illness: The Cry of the Flesh. Stocksfield, UK: Acumen, 2008.
Crichton, Paul, Havi Carel, and Ian James Kidd. "Epistemic Injustice in Psychiatry." BJPsych Bulletin 41, no. 2 (2017): 65-70.
Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. Chicago, IL: University of Chicago Press, 2013.
© 2018 Anna K. Swartz
Anna K. Swartz received her BA in anthropology from Wellesley College and MS in rhetoric, theory and culture from Michigan Technological University. Her research is her currently centered on the philosophy of mental health, medical ethics, and prison abolition.