‘Phenomenology of Illness’ by Havi Carel (Oxford University Press, 2016).
Vita Non Est Vivere, Sed Valera Vita Est: a review of Havi Carel’s Phenomenology of Illness.
Martial’s epigram — life is not just being alive, but being well — is an appropriate epigram for The Phenomenology of Illness, which explores the concepts of illness and a life well lived. Although overtly a call to arms for philosophers to take more seriously the experience of illness and what this means to be human and for humans, the superb clarity of language makes this an accessible book for anyone interested in this field. It is a text which can speak poignantly to patients, those who care for them, and anybody with an interest in the philosophy of medicine. It is to the teachers of student doctors, nurses and other future healthcare workers that I particularly address this review. Havi Carel’s book lays starkly bare the injuries endured by patients due to the limitations of the biomedical model of discourse — but thankfully illustrates many possible ways forward. By blending her skills in philosophical discussion with her intense personal experience of severe and potentially fatal illness, reading this book provided many moments when a light bulb went on in my brain. I could see many ways to utilise her writing to help students understand better the experience of illness and to provide more personalised and empathic care and support for the ill. In particular, her discussion of being well within illness is a very useful one for this purpose.
Carel’s primary philosophical sources are Martin Heidegger, Edmund Husserl, Jean-Paul Sartre and Maurice Merleau-Ponty. They were all phenomenologists who believed that we can only understand the world, others and ourselves, by the experiences mediated through our bodies. (These experiences are known as ‘phenomena,’ hence the name for this type of philosophy.) Carel gently but thoroughly takes the reader through this philosophy in a way which is neither condescending to the professional philosopher nor obscure to non-philosophical reader. Illness, (by which Carel means severe, chronic — as in long-lasting or permanent — and/or potentially fatal), has the unique ability to illuminate and lay bare the nature of this knowledge obtained via phenomena. Her arguments recall to me the manner in which Susan Sontag (1978) and Virginia Woolf (2008) interpreted the contrasting worlds of the healthy and the ill: the ‘upright army of the healthy’ (Woolf 2008:103) live in the daytime world, above ground and in the sunshine. When ill, the night comes, and the stars — which were always there but never seen in daytime — are now visible (Wootton 2017). The task of phenomenology is to illuminate those stars, the unconscious assumptions of the upright army which only become visible under particular circumstances such as illness.
In traversing this world of illness Carel argues (and rightly so) that one must not confuse disease with illness, a common error in the practice of medicine. Disease is the ‘what is it’, analysed with the objective gaze of the medical eye and often with great success. Illness is the ‘what is it like’, the subjective, the personal. Only the patient really knows what this is and herein lies many problems. The successes of the biomedical and ease with which disease can be spoken, discussed and dissected all contribute to the marginalisation of the patient and her story. I found Carel’s chapter on epistemic injustice in healthcare (Chapter Eight) a wonderfully articulate and intellectually decisive analysis of the reasons why the patient as knower (her italics, p. 180) becomes silenced. I would argue that this chapter, together with Chapter Three (The Body in Illness) for its description of the effects of illness, should be required reading for anyone who wishes to study medical humanities seriously and wishes to be taken seriously as a medical humanitarian. The plethora of insights, the sensitivity of her writing and the depth of her philosophical analysis is a feast for those wishing to understand what it is like to be a patient in all senses of the word. Even if philosophy fails to answer her call to examine illness more closely than in the past, Carel, by writing these two chapters alone, has done us all a great favour.
This is not to be dismissive of the other seven chapters. Within these lie (amongst other gems) an illuminating description of the losses for the ill and the changes in perception of the world due to bodily changes and bodily doubt, as well as an expansion of the concept (first addressed in her earlier book Illness [2013]) of health within illness. Illness can bring gains to our lives, by inviting us to reflect, philosophize and to live in the present, be courageous, regain control of life, reshape one’s self, transcend and empower one’s self, and discover a new way of life (pp. 142-5). This new way can be thought of as ‘health-within-illness’. Ignorance, arrogance, the un-ill’s ‘pathophobic conception of illness’ (p. 131) and thanatophobia all contribute to the disbelief of the un-ill that this is so. Her argument is persuasive although not (yet) complete. There is ample scope to develop this concept further.
In many ways, Phenomenology of Illness can be viewed as the companion to Illness (2013), extending the reader and the concepts of the earlier work. I already use the latter as a source book for teaching undergraduate medical students longitudinal care (i.e. long term care) in general practice, and in reading her latest work, I have amassed a series of wonderful quotes which I am sure will pepper my teaching for years to come. I would challenge Carel, though, in her assertion that the philosophical journey of the ill can only apply to those whose illness is severe, permanent, long-lasting and/or fatal and cannot be accessed via the usual minor ailments and injuries which beset all of us at some time. I believe these, too, carry whispers of our own mortality as does the close and long association with those who are ill, whether as a health professional, carer, friend, or family. Regardless, for those who chose to think and reflect about illness, life and how to live well there is a rich feast of food for thought within these pages. Not forgetting the philosophers.
Reviewed by Dr Katherine Hall, Senior Lecturer in the Department of General Practice and Rural Health, Dunedin School of Medicine, University of Otago, New Zealand. A citizen of both Australia and New Zealand, she completed her medical training at the University of Sydney. She almost completed her specialist training in intensive care medicine but was ‘intellectually seduced’ into bioethics completing her PhD on ethics and intensive care decision-making in 2000. She is also a Fellow of the Royal New Zealand College of General Practitioners and works in general practice one day a week. Apart from ethics and decision making her other major research interests are medically unexplained symptoms and medical humanities and she is currently completing a Bachelor of Arts majoring in Classics. She is currently researching chronic fatigue and also a(nother) new theory for the death of Alexander the Great.
Correspondence to Dr Katherine Hall.
Works cited:
Carel, Havi. 2013. Illness: the cry of the flesh. (Revised edition). London: Routledge.
Sontag, Susan. 1978. Illness as Metaphor, New York: Farrar, Straus and Giroux.
Woolf, Virginia. 2008. ‘On Being Ill’, in Selected Essays, David Bradshaw (ed.) Oxford: Oxford University Press, pp. 101-110.
Wootton, Sue. 2017. Unpublished presentation to English Department, University of Otago, Dunedin, New Zealand; 5 May 2017.