How appropriate Martial’s words are for Phenomenology of Illness by Havi Carel, 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 bare the injuries endured by patients due to the limitations of the biomedical model of discourse – but thankfully illustrates many possible ways forward.
Carel (Professor of Philosophy at the University of Bristol) blends her skills as a philosopher with her intense personal experience of severe and potentially fatal illness. There were many moments, reading this book, when a lightbulb went on in my brain. I could see many ways to utilise her writing to help students better understand the experience of illness, and to provide more personalised and empathic care and support for the ill. Her discussion of being well within illness is particularly useful.
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 and/or potentially fatal illness) has the unique ability to illuminate and lay bare the nature of knowledge obtained via phenomena. Carel’s arguments recall to me the manner in which Susan Sontag and Virginia Woolf interpret the contrasting worlds of the healthy and the ill. Woolf, for example, wrote of the ‘upright army’ of the healthy, who live in the ‘daytime’ world, above ground and in the sunshine. When ill, wrote Woolf, “we cease to be soldiers in the army of the upright; we become deserters.” The stars – which were always there but never seen in daytime – are now visible. The task of the phenomenology of illness is to illuminate those stars.
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, 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 approach and the ease with which disease can be discussed and dissected contribute to the marginalisation of the patient and her story.
Carel has a wonderfully articulate chapter on epistemic injustice in healthcare. She delivers an intellectually decisive analysis of the reasons why the ‘patient as knower’ becomes silenced. I would argue that this chapter, together with the chapter called The Body in Illness should be required reading for anyone who wishes to study medical humanities seriously and who 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.
This is not to be dismissive of the other seven chapters. These include illuminating descriptions of the losses experienced by the ill; changes in how the world is perceived due to bodily changes and bodily doubt; and an expansion of the concept (first addressed in her earlier book Illness: The Cry of the Flesh) of health within illness.
Illness can bring gains to our lives, by inviting us to reflect and philosophise, 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. This new way can be thought of as ‘health-within-illness’. Ignorance, arrogance, a “pathophobic conception of illness” and thanatophobia all contribute to a widespread disbelief that this can be 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 a companion to Illness, extending the concepts of the earlier work. I already use Illness 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.
Dr Katherine Hall is 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.
- 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. “It’s dark in there: the novelist’s gaze on illness.” Unpublished presentation to English Department, University of Otago, Dunedin, New Zealand; 5 May 2017.
This is an edited version of a review that was first published on the Durham University Centre for Medical Humanities site: here.