I’ve just read “illness” by Havi Carel (ISBN 978-1-84465-152-8). This is an excellent book and as Raymond Tallis says on the back “should be read and re-read by everyone who is professionally involved with illness, who is ill, or is likely to become ill; which is to say, by all of us”. I couldn’t agree more.
Havi Carel teaches philosophy at the University of the West of England. She has developed a rare but extremely serious disease – LAM – which quickly reduced her lung capacity by 50%. She brings her professional philosophical knowledge and understanding to the personal experience of this illness in a way which both challenges the way we think about illness, (chronic illness especially), and provides a useful framework for a positive engagement with such difficult life-limiting experiences as disabling disease.
I would like to see significant changes in the way health care is delivered based on the lessons revealed in this book. We need a fundamental re-humanisation of our ways of thinking about illness in order to bring about a sea change in the way doctors, nurses and other health professionals work.
Havi Carel writes with great clarity. Don’t be frightened off by the fact she’s a philosopher. Despite the fact that she draws on the work of philosophers from Epicurus to Heidegger and Merleau-Ponty (amongst others), there is nothing difficult to grasp or understand in this book. She skilfully uses the works of great philosophers to both illuminate and clarify our thinking about health and illness. Not only does she use clear, straightforward English, but the personal story woven into book makes it a profoundly moving and completely engaging read.
On a naturalistic view, illness can be exhaustively accounted for by physical facts alone. This description is objective (and objectifying), neutral and third-personal………Phenomenology privileges the first-person experience, thus challenging the medical world’s objective, third person account of disease. The importance phenomenology places on a person’s own experience, on the thoroughly human environment of everyday life, presents a novel view of illness.
Instead of viewing illness as a local disruption of a particular function, phenomenology turns to the lived experience of this dysfunction. It attends to the global disruption of the habits, capacities and actions of the ill person.
This consideration of the relationship between objective and subjective perspectives is I think central to the development of humane and humanly relevant medicine. Eric Cassell nicely explores this conceptually by unpicking the words “disease” and “illness”, and clinically by asking doctors to encourage patients to talk about their “suffering”. The fundamental shift is a change of perspective from the components of the body, to the socially embedded individual human being. Havi Carel’s consideration of the “biological body” and the “lived body” sets a wonderfully clear perspective from which to understand this.
Normally, in the smooth everyday experience of a healthy body, the two bodies are aligned, harmonious. There is agreement between the objective state of the biological body and the subjective experience of it. In other words, the healthy body is transparent, taken for granted……..It is only when something goes wrong with the body that we begin to notice it.
This is exactly the point made by Hans Georg Gadamer in his excellent collection of essays entitled “The Enigma of Health”. For me, reading his essays completely changed the way I thought about health and illness. Havi Carel has given me a new framework for these concepts and values and I find that very exciting.
One of the most useful parts of this book is the exploration of the idea of “health within illness”. We have a tendency to write off the chronically sick expelling them from the land of the healthy to the land of the ill (as Susan Sontag so clearly wrote). But life’s not like that. Having a chronic illness does NOT mean never being able to experience health again. In the last two chapters of the book, “Fearing death”, and “Living in the Present” she tackles this head on, drawing on advice from Epicurus, Heidegger and the contemporary French philosopher, Hadot. The wonder and the joy of the present is something I’ve posted about before – here and here – both times referring to Hadot in particular. I couldn’t agree more.
Let me finish this short review though by focusing on her other really important point –
Empathy. If I had to pick the human emotion in greatest shortage, it would be empathy. And this is nowhere more evident than in illness. The pain, disability and fear are exacerbated by the apathy and disgust with which you are sometimes confronted when you are ill. There are many terrible things about illness; the lack of empathy hurts the most.
Virtually every day I hear terrible stories of heartlessness and carelessness. Of patients who have experienced a total lack of humane care in the hands of health care professionals. Always those stories shock me. In one way I don’t understand them. Why work in a caring profession if you frankly don’t care? But in another way I blame the system. This exclusive emphasis on the biological body reduces human beings to cases of diseases. By ignoring or belittling the patients’ narratives, or by not paying attention to their subjective experiences of their “lived bodies”, we literally de-humanise our practice.
To think of a human being is to think of a perceiving, feeling and thinking animal, rooted within a meaningful context and interacting with things and people within its surrounding.
It’s time to re-humanise Medicine. This book is an important contribution to that project.
