Illness is a breathtakingly intense experience. It unsettles, and sometimes shatters, the most fundamental values and beliefs we hold. It is physically and emotionally draining. It can be physically and psychologically debilitating. Illness requires serious effort and continuous work to adapt practically to its limitations and to adjust psychologically to the pain, restricted horizons and frustration it brings. It forces the ill person and those around her to confront mortality in its most direct manifestation. In all of these ways illness requires labour, attention, and a conscious and sustained effort.
But, as I argue in my latest book, Phenomenology of Illness (OUP 2016), illness is also existentially and intellectually demanding – and potentially rewarding – in ways hitherto unexplored. Illness can challenge our most fundamental beliefs, 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 is one such belief that comes under intense scrutiny when one is given a poor prognosis. Perhaps a shorter but more meaningful life is equally valuable, or even better than a longer life? In what ways does the value of life depend on its duration? 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 round the corner’, things that were ‘easy to carry’, and events (like death) that were vaguely conceived as ‘a long way off’ change their meaning. For example, stairs that once led somewhere are now merely an obstacle for the paraplegic. Not only the contents of experience but also its structure and normative fit change in illness; we need to study these changes carefully.
I claim that in order to fully understand illness, it has to be studied as a lived experience. I use a phenomenological approach for this study. Phenomenology – the philosophical method for studying lived experience – is not a variant form of scientific enquiry, but a method for examining subjective and pre-theorised human experience.
"Illness is one path leading to philosophical reflection by calling us to question our understanding of the world, fundamental beliefs, habits, and expectations."
In the most general terms we can say that illness changes how the ill person experiences the world and how she inhabits it. Such a dramatic and overarching change to experience deserves, or often demands, philosophical attention. A common reaction to a diagnosis of illness is a sense of meaninglessness and despair. Such an event challenges the ill person to reflect on her life and search for ways of regaining its meaningfulness. As such, illness is one path leading to philosophical reflection by calling us to question our understanding of the world, fundamental beliefs, habits, and expectations. Illness often distances the ill person from her previous life and constitutes a violent invitation – or, again, demand – to philosophise.
What kind of invitation to philosophise illness is, and what philosophical work can arise from this invitation, are two major concerns which have so far garnered little attention from philosophers. I want to shed light on the philosophical productiveness of illness but also on its violent mode. Illness is a demand for reflection and change, but that demand 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 and demanding, it extends its bony fingers to grab, restrict, and sometimes destroy all that we hold dear: freedom, motility, agency, action, possibility, and the openness of the future. Perhaps philosophers’ neglect of illness is one sort of such denial of the realities of life through wilful, although often unconscious, blindness to its uglier faces.
Contra this tendency to resist thinking about illness, I propose that illness is nothing short of a philosophical tool. Through its pathologising effect illness distances the ill person from taken for granted routines and habits and thus reveals aspects of human existence that normally go unnoticed. For example, I claim that we have a tacit sense of bodily certainty that only comes to our attention when it is disrupted and replaced by bodily doubt. As such, illness is a useful philosophical tool for shedding light 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 in particular phenomenology, can be used to understand the experience of illness, and illness can be used to shed new light on central areas of philosophy such as ethics, political philosophy, and the study of human experience. The illumination is mutual.
"What is immediately striking is how 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 as a symptom."
The central case study I analyse in the book is respiratory illness and breathlessness, using the phenomenological account described above. The experience of breathlessness is acutely distressing, and yet it is also invisible and difficult to both measure and describe. It is invisible because respiratory patients are often limited in mobility and energy. This makes them less visible. But it is also invisible because the experience of breathlessness can seem innocuous to the external observer. However, the experience of breathlessness is pervasive, acute, and ill-understood.
Breathlessness is not only a symptom; it is a constant horizon that frames the experience of a respiratory patient. It is a limiting factor, and a condition of possibility for any action or experience the ill person may have. It also has a rich symbolic and psychological meaning. Our first and last breaths mark the beginning and end of life. A baby’s first breath, noted by her cry, is a symbolic moment of joining humanity, with a voice propelled outwards by her tiny lungs. Here I am, she says. Hear me. The last breath is 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 and letting out. This life can be lived within the horizon of normal breathing and breathlessness, but is often lived in pathological breathlessness, sometimes towards the end of life and sometimes earlier, because of a respiratory disease.
The richness of the experience of breathlessness and the way in which it differs from normal breathing are currently studied in detail by the Life of Breath project, funded by the Wellcome Trust. What is immediately striking is how 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 as a symptom.
Recent work in the neurophysiology of breathlessness shows that the same brain pathways are activated in breathlessness as in pain, hunger and thirst. This may lead us to explore the possibility that breathlessness bears a resemblance to pain, but is not analogous to it. It also makes salient the need for a phenomenological analysis, which may reveal how the experience of breathlessness is similar or dissimilar to other unpleasant sensations such as pain, hunger and thirst.
It is unfortunate that we use the same term – breathlessness – to cover both normal breathlessness experienced on exertion, and pathological breathlessness, triggered by minimal or no effort and debilitating. Do the two sets of experiences overlap? Do they have shared features? Do they lie on a continuum or are they phenomenologically distinct? How do people who focus on their breathing (what we might call ‘aware breathers’) come to experience breathlessness? Can particular breathing practices, such as meditation, singing, playing musical instruments, and sports, teach us anything useful about breathlessness? Clearly there is phenomenological work to be done in this area both philosophically and empirically.
"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 is and is not permitted to do and be."
Phenomenologically speaking, breathlessness is remarkable in two intertwined ways: it is an overpowering sensation, which we are deeply sensitive to, but it is also behaviourally subtle, and so often invisible to others. Even we ourselves are not always aware of when we start to become breathless and why. Techniques like meditation and mindfulness training help practitioners become more aware of their breathing, but this is hard to do when one is immersed in an activity and her attention is turned away from herself.
This phenomenon has led Gysels and Higginson (2008) to coin the term ‘invisible disability’. The Janus-faced duality of breathlessness – the fact that it is so real 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 is phenomenologically salient for the reasons given above, and that a phenomenological analysis may reveal facets of this symptom that have hitherto been unrecognised or have been obscured by a purely physiological analysis.
So what is the experience of severe, pathological breathlessness like? Like being trapped. That is what breathlessness feels like. Trapped in the web of uncertainty, bodily doubt, 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 respiratory failure. Even if illness descends upon you gradually, over many years, there comes a point where high spirits and positive attitude just can’t cut it anymore.
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 is and is not permitted to do and be. The spirit is tethered to the body and its limitations cut deep into spiritual life. Transgressions are punished harshly. Push yourself too hard, and you will pay. Pay with nausea, with dizziness; pay by passing out, collapsing in front of strangers, or worse, in front of loved ones.
The world shrinks and becomes hostile. The sense of possibility that accompanies objects disappears. A bicycle is not an invitation for an afternoon of fresh air and freedom. It is a relic of days bygone. Hiking boots now sit leaden in a cupboard. They are no longer ‘something to be worn when going for a hike’; they have long been too heavy and hiking too hard. The inviting smell of mud and hills has faded from their soles, but you cannot find it in your heart to give them away. That would be admitting the finality and irreversibility of your condition.
I suggest that severe breathlessness changes the breathless person’s psychology, horizon of possibility, sense of trust, capacities and embodied subjectivity. It transforms the breathless person’s relationship to her world, to herself and to others. It changes how she views herself and what sense of agency, possibility, and physicality she comports herself with. This change cannot be captured solely by using the tools of biomedical science, such as lung function tests. What is needed is a method with which to study the lived experience of breathlessness. And that method can be found in phenomenology.
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