Havi Carel on understanding illness through its lived experience

Carel, Havi

LSE Research Online

Breathing Life into a Phenomenology of Illness, Part IIHavi Carel on understanding illness through its lived experiencePart I can be read here.What is breathlessness? This is a seemingly simple question. Why, it’s the well-known experienceof panting, perhaps getting hot and sweaty, maybe a heaving of the chest, or a slight achingaround the ribs, or an urgent need to breathe through your mouth and not just nose? Everybodygets breathless when they exercise or run for the bus. Everybody knows what it’s like. Not sosimple. In fact, breathlessness is far more complex and far less understood than it seems.Breathlessness is also a very common symptom of a wide range of respiratory and cardiacdisease, as well as other disorders such as panic attacks and disorders of chest muscles. As such,it affects a huge number of patients around the world. Indeed, chronic obstructive pulmonarydisease (COPD), which is characterized by progressive and debilitating breathlessness, isestimated to become the third leading cause of death globally by 2020. According to improvingand integrating respiratory services (IMPRESS), 25% of attendees to emergency departments,62% of elderly people, and around 95% of people with COPD report breathlessness. It is a strongpredictor of mortality, and very common in the end stage of many diseases.Prima facie, breathlessness seems like a simple bodily sensation. In fact, it is multi-faceted andincorporates several sources of input, such as oxygen saturation level, respiratory effort, chestmuscles work, and blood pH level. In severe desaturation, feelings akin to suffocation, dizziness,sense of loss of control, and incontinence are often present. Overall, the sensation is one of acuteunpleasantness and distress, but not of pain as we normally understand it.Recent work in the neurophysiology of breathlessness shows that the same brain pathways areactivated in breathlessness as are in pain, hunger, and thirst. This may lead us to explore thepossibility that breathlessness bears a family resemblance to pain, but is not analogous to it. Italso makes salient the need for a phenomenological analysis, which may reveal how theexperience of breathlessness is similar or dissimilar to other unpleasant sensations such as pain,hunger, and thirst.Breathlessness can be experienced with or without other symptoms such as oxygen desaturation,hyperventilation, dysfunction of chest muscles, and dizziness. It may be that the breathlessnessexperienced in an asthma attack, in which the airways are suddenly narrowed, is different to theexperience of breathlessness in COPD or heart failure. Currently, the term ‘breathlessness’ is usedin both medical and lay language to cover a vast array of medical conditions and their associatedexperiences. It is not clear that the term is precise enough, nor that it captures the complexity ofthe experience.It is unfortunate that we use the same term—breathlessness—to cover both normalbreathlessness, experienced on exertion, and pathological breathlessness, triggered by minimal orno effort and which is debilitating. Do the two sets of experiences overlap? Do they have sharedfeatures? Do they lie on a continuum or are they phenomenologically distinct? How to people whofocus on their breathing (what we might call ‘aware breathers’) come to experiencebreathlessness? Can particular breathing practices, such as meditation, singing, playing musicalinstruments, and sports teach us anything useful about breathlessness? Can we compare ‘awarebreathers’ who are healthy with those who become aware of their breathing due to a pathology?Clearly, there is phenomenological work to be done in this area, both philosophically andempirically.Breathlessness is a common symptom, but it is also unique. Unlike many other medical symptoms,breathlessness (and breathing) has complex and powerful psychological, cultural, and spiritualdimensions. We ‘take a deep breath’ to calm ourselves; we are invited to ‘inhale deeply’ the freshair in the countryside; a remarkable artwork ‘takes our breath away’. Breathing is deeply andintimately connected to, and reﬂective of, our state of mind, feelings, mood, and sense ofwellbeing. That is why breathing is central to many spiritual practices such as pranayama,meditation, and some religious practices, especially in Eastern religions. When one is anxious orfrightened, breathing becomes fast and shallow. Panic attacks are often accompanied by a fear ofbeing unable to breathe, and the fear of suffocation that follows exacerbates the attack. In short,both normal and pathological breathing are complex phenomena, with many levels of expressionand a multifactorial physiological, psychological, and spiritual/cultural underpinning.Phenomenologically speaking, breathlessness is remarkable in two intertwined ways: it is anoverpowering sensation, which we are deeply sensitive to, but it is also behaviourally subtle, andso often invisible to others. Even we ourselves are not always aware of when we start to becomebreathless and why. Techniques like meditation and mindfulness training help practitioners becomemore aware of their breathing, but this is hard to do when one is immersed in an activity and one’sattention is turned away from oneself. This phenomenon has led Gysels and Higginson (2008) tocoin the term ‘invisible disability’. The Janus-faced duality of breathlessness—the fact that it is soreal and overwhelming to the person experiencing it and yet so invisible to those around her (and,in particular, to health professionals)—merits close analysis. I suggest that breathlessness isphenomenologically salient for the reasons given above, and that a phenomenological analysismay reveal facets of this symptom that have hitherto been unrecognized or that have beenobscured by a physiological analysis of the symptom.So what is the experience of severe, pathological breathlessness like? Here are a few passagesfrom Phenomenology of Illness:Trapped. That is what breathlessness feels like. Trapped in the web of uncertainty, bodilydoubt, practical obstacles and fear. The deepest fear you can think of. The fear of suffocation,of being unable to breathe, the fear of collapsing, blue, desaturated to the point of respiratoryfailure. Even if illness descends upon you gradually, over many years, there comes a point—probably around the ‘30% of predicted’ mark—where high spirits and positive attitude just can’tcut it anymore.Monday, 20 February 2017Share This Story, Choose Your Platform!You are faced with the shrinking of your world, choices, freedom and eventually, your spirit.Our embodiment determines our possibilities and delineates with extreme clarity what one isand is not permitted to do and be. The spirit is tethered to the body and its limitations cut deepinto spiritual life. Transgressions are punished harshly. Push yourself too hard, and you willpay. Pay with nausea, with dizziness; pay by passing out, collapsing in front of strangers, orworse, in front of loved ones.What is the phenomenology of this total sensation? Like pain, you cannot ignore it under anycircumstances. You might try to pretend outwardly, but on the inside, the sense of loss ofcontrol—and the secondary fear of that sensation—will keep you tethered to your oxygen tank,and reluctant to go anywhere where your oxygen arrangements might be compromised. Thepsychological impact is enormous. The sense of bodily doubt and insecurity gives rise to ahost of psychological reactions: despair, fearfulness, anxiety, depression, loss of hope.Respiratory illness is a life sentence with no reprieve, no parole board, no early release.The world shrinks and becomes hostile. The sense of possibility that accompanies objectsdisappears. A bicycle is not an invitation for an afternoon of fresh air and freedom. It is a relicof days bygone. Hiking boots now sit leaden in a cupboard. They are no longer ‘something tobe worn when going for a hike’; they have long been too heavy and hiking too hard. Theinviting smell of mud and hills has faded from their soles, but you cannot ﬁnd it in your heart togive them away. That would be admitting the ﬁnality and irreversibility of your condition.The physicality of every action needs to be calculated, considered, conﬁgured to suit yourbody’s limitations. You now sit on the ﬂoor to receive the slobbery kisses of your toddler.Groceries have to be judged by their weight. Strolling along on a beautiful summer day iscensored by the gradient, amount of oxygen left in the tank, temperature and fatigue.Everything becomes potentially debilitating, frustrating; a problem.I recently started to think that chronic and debilitating breathlessness of the kind described in thesepassages is a transformative experience, to use Laurie Paul’s term. A transformative experience isan experience that changes you deeply in signiﬁcant and lasting ways, both epistemically(teaching you new things through having new experiences) and personally (changing yourpriorities and preferences as a result of having new experiences). I suggest that severebreathlessness changes the breathless person’s psychology, horizon of possibility, sense of trust,capacities, and embodied subjectivity. It transforms the breathless person’s relationship to herworld, to herself, and to others. It changes how she views herself and what sense of agency,possibility, and physicality she comports herself with. In future work (jointly with Ian James Kidd), Iplan to explore in detail the proposition that breathlessness is a transformative experience. But forthe time being, I hope this blog has given you a taste of Phenomenology of Illness and—yes—nowis the time to stretch and take a deep breath.Havi Carel  is Professor of Philosophy, University of Bristol. This essay is based on her newbook Phenomenology of Illness (Oxford University Press, 2016). Her research is concerned withissues in the philosophy of medicine, phenomenology, and the intersection between the two.Image credit: Jessica Lloyd-Jones, Electric Lung 2008Related PostsPowered by TCPDF (www.tcpdf.org)

Breathing life into a phenomenology of illness, part II

Breathing Life into a Phenomenology of Illness, Part IHavi Carel on understanding illness through its lived experienceThe experience of illness is a universal and substantial part of human existence. Like death, illnessraises important philosophical issues. But unlike death, illness, and in particular the experience ofbeing ill, has received little philosophical attention. This may be because illness is oftenunderstood as a physiological process that falls within the domain of medical science, and is thusoutside the purview of philosophy. In my new book, Phenomenology of Illness, I claim that theexperience of illness has been wrongly neglected by philosophers in general, philosophers ofscience and medicine in particular, and by biomedical theory and practice. This philosophical andbiomedical neglect of the experience of illness stands in stark contrast to the intense interest inthis experience from the general public and from ill people and those who care for and about them.In the book, I suggest that it is necessary to supplement a naturalistic account of disease (I use theterm ‘disease’ to denote physiological dysfunction) with a philosophical study of the experience ofillness (how the disease is experienced) itself. This approach aims to study illness without viewingit exclusively as a subject of scientiﬁc investigation. It is not enough to see illness as an entity inthe world that can be studied with the tools of science. In order to fully understand illness, it alsohas to be studied as a lived experience. To study the lived experience of illness is necessarily toexplore its existential, ethical, and social dimensions.Hence I use a phenomenological approach for this study. Phenomenology—the philosophicalmethod for studying lived experience—is not a variant form of scientiﬁc enquiry, but a method forexamining pre-reﬂective, subjective, and pre-theorized human experience as it is lived, prior to itstheorization by science.The aim of the book is twofold: to contribute to the understanding of illness through the use ofphilosophy and to demonstrate the importance of illness for philosophy. This bilateral approach liesat the heart of the book. I argue that a philosophical analysis is essential to developing a fullunderstanding of illness, and complements work in medical anthropology, sociology of health andillness, health psychology, and qualitative health research.Illness is a breathtakingly intense experience. It unsettles, and sometimes shatters, the mostfundamental values and beliefs we hold. It is physically and emotionally draining. It can bephysically and psychologically debilitating. Illness requires serious effort and continuous work toadapt practically to its limitations and to adjust psychologically to the pain, restricted horizons, andfrustration it brings. It forces the ill person and those around her to confront mortality in its mostdirect and bare manifestation. In all of these ways, illness requires labour, attention, and aconscious and sustained effort.But, as I argue in the book, illness is also existentially and intellectually demanding—andpotentially rewarding—in ways hitherto unexplored. Illness can challenge our most fundamentalbeliefs, expectations, and values, and this accords it a distinct and important philosophical role.For example, the belief that a longer life is better than a shorter life comes under intense scrutinywhen one is given a poor prognosis. Perhaps a shorter but more meaningful life is equallyvaluable, or even better than a longer life? In what ways does the value of life depend on itsduration? These are some of the questions that may arise in response to illness.Many ill people report a change in their perception of space and time. Places that were ‘just roundthe corner’, things that were ‘easy to carry’, and events (like death) that were vaguely conceivedas ‘a long way off’ change their function and, as a result, also their meaning. For example, stairsthat once led somewhere are now merely an obstacle for the paraplegic. Not only the contents ofexperience but also its structure and normative ﬁt change in illness; we need to study thesechanges carefully.In the most general terms, we can say that illness changes how the ill person experiences theworld and how she inhabits it. Such a dramatic and overarching change to experience deserves,or often simply demands, philosophical attention. A common reaction to a diagnosis of illness is asense of meaninglessness and despair. Such an event challenges the ill person to reﬂect on herlife and search for ways of regaining its meaningfulness. As such, illness is one path leading tophilosophical reﬂection by calling us to question our understanding of the world, fundamentalbeliefs, habits, and expectations. Illness often distances the ill person from her previous life andconstitutes a violent invitation—or, again, demand—to philosophize.What kind of invitation to philosophize illness is, and what philosophical work can arise from thisinvitation, are two major concerns of the book, which have so far garnered little attention fromphilosophers. I offer an account of the philosophical productiveness of illness, but also of its violentmode. Of course, the invitation to reﬂect on one’s life issued by illness can be met with resistance.Many people, both healthy and ill, deny, ﬂee, or otherwise resist thinking about vulnerability,morbidity, and mortality. This reaction stems from the difﬁcult nature of illness. Unwelcome anddemanding, it extends its bony ﬁngers to grab, restrict, and sometimes destroy all that we holddear: freedom, motility, agency, action, possibility, and the openness of the future. Perhapsphilosophers’ neglect of illness is one sort of such denial, or an attempted falsiﬁcation (in theNietzschean sense) of the realities of life through wilful, although often unconscious, blindness toits uglier faces.Contra this tendency to resist thinking about illness, I propose that illness is a philosophical tool.Through its pathologizing effect, illness distances the ill person from taken-for-granted routines andhabits, and thus reveals aspects of human existence that normally go unnoticed. For example, Iclaim that we have a tacit sense of bodily certainty that only comes to our attention when it isdisrupted and replaced by bodily doubt. As such, illness is a useful philosophical tool for sheddinglight on the structure and meaning of human existence and experience.What we have, therefore, is a bilateral ﬂow from philosophy to illness and back. Philosophy, and inparticular phenomenology, can be used to understand the experience of illness, and illness can beMonday, 5 December 2016Share This Story, Choose Your Platform!Related Postsused to shed new light on central areas of philosophy such as ethics, political philosophy, and thestudy of human experience. The idea that the illumination is mutual is a central theme of the book.The central case study the book examines is the symptom of breathlessness. I analyse respiratoryillness and breathlessness, using the phenomenological account developed in the book. Theexperience of breathlessness is acutely distressing, and yet it is also invisible and difﬁcult to bothmeasure and describe. It is invisible because respiratory patients are often housebound or havelimited mobility. This makes them less visible. But it is also invisible because the experience ofbreathlessness can seem innocuous to the external observer. However, the experience ofbreathlessness is pervasive, acute, and ill-understood. The book uses the phenomenological toolsdeveloped in it to outline a phenomenology of breathlessness and to explore the discrepancybetween the subjective experience of breathlessness and the objective measurements of lungfunction.Breathlessness is not only a symptom; it is a constant horizon that frames the experience of arespiratory patient. It is a limiting factor, and a condition of possibility for any action or experiencethe ill person may have. It also has a rich symbolic and psychological meaning. Our ﬁrst and lastbreath mark the beginning and end of life. A baby’s ﬁrst breath, noted by her cry, is a symbolicmoment of joining humanity, with a voice propelled outwards by her tiny lungs. It is the breath oflife. Here I am, she says. Hear me. Witness my efforts to exist and communicate. The last breathis rasping, irregular, forced. Or it can be barely perceptible. It says: I am running out of breath,which is a running out of life. And in between the ﬁrst inhalation and last exhalation lies all of life,continuously rising and falling, inhaling the exterior and exhaling the unneeded, taking in andletting out. This life can be lived within the horizon of normal breathing and breathlessness, but isoften lived in pathological breathlessness.The richness of the experience of breathlessness and the way in which it differs from normalbreathing are currently studied in detail by the Life of Breath team. What is immediately striking ishow intimately entwined life and breath are, which makes breathing a juncture of the physiological,psychological, existential, spiritual, and cultural. Thus breathlessness cannot be studied solely asa symptom. In part two of this essay, I will offer a phenomenology of breathlessness that takes it tobe a transformative experience, much broader and more signiﬁcant than a medical symptom.Havi Carel is Professor of Philosophy, University of Bristol. This essay is based on her new bookPhenomenology of Illness (Oxford University Press, 2016). Her research is concerned with issuesin the philosophy of medicine, phenomenology, and the intersection between the two.Image credit: Jessica Lloyd-Jones, Electric Lung 2008Powered by TCPDF (www.tcpdf.org)

Breathing life into a phenomenology of illness, part I

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