Living in the shadow of illness

Living in the shadow of illness

Philosopher Havi Carel explains how her own illness emphasised the social taboo surrounding disease and death. She feels it is still possible to lead a good life while ill and that discussion of the topic should be part of our mainstream culture
 
Serious illness is a life-transforming event. This thought did not once occur to me while I was healthy. It was only when I was diagnosed with a progressive and currently untreatable lung disease, lymphangioleiomyomatosis (LAM), that I realised the full impact of illness on one’s life. It was only when it happened to me that I came to see, and then confront, fundamental facts about human existence. I learned, not just intellectually but also existentially, personally, that we are finite, limited creatures. That death awaits us all. That our capacity to deal with what is really important, but difficult to think and talk about, is limited. That we shy away from painful things. It was the first time I confronted these serious issues; those who were close to me had to confront them too.
 
One thing I became aware of was that illness and ill people force you to face your own mortality. And a few months into my illness I began to realise that this often means that ill people are sentenced to isolation and loneliness because of the difficult emotions their illness arouses in others. Illness can be a process of self-discovery, of confronting and overcoming problems that make previous ones seem laughable. But it is a lonely journey.
 
I was quickly dissatisfied with the medical approach to illness, reducing it to physical disease. Disease was seen as a localised dysfunction of a body part and was not connected with the life-world of the ill person. I learned that when doctors ask ‘how are you?’ they mean ‘how are your lungs?’ The rest of me – my personal coping, the revolution to my physical existence and the complete rethinking of values – had no place in the consultant’s room. No, I thought, illness is not a localised dysfunction of a physical body part. It is life-transforming and self-transforming in a way that is unparalleled. It changes not only your body, but also your self-understanding, your work, your relationships with others and your expectations. In short, it changes everything.
 
And so I set out to read the philosophical literature on illness. I found very little on the first-person experience of what it is like to be ill. Eventually I found a philosophical approach that seemed to capture what was happening to my body and my life: phenomenology. This approach, developed by French philosopher Maurice Merleau-Ponty (1908-1961), sees the person as a holistic unit. It rejects the traditional separation into body and soul (or mind, as we now call it) and views human existence as inherently embodied, situated in a specific place and culture. Illness, it argues, should not be divided into its physical aspects (sometimes called disease) and its secondary social, economic and psychological impact. Rather, illness is both the physical changes and their personal, social and temporal effects. The artificial separation serves merely to obscure the essential unity of the human being.
 
From this point, we can see how changes to the body have a much wider significance. For example, limiting one’s movement may also impact one’s ability to act, to perform tasks and achieve goals. Such a limitation, therefore, will also affect one’s agency and ability to perform actions. A pertinent example is philosopher S Kay Toombs’ account of being in a wheelchair (she suffers from multiple sclerosis). Being in a wheelchair is hard enough as it is, when negotiating cobbled streets, uneven pavements or steps. But additionally, when in a wheelchair, she says, people often ignore her. They talk to her husband, asking him to ask her what she thought or wanted (‘What would your wife like to drink?’). They raise their voice and speak slowly to her, as if being unable to walk somehow entails a mental deficiency. In short, her independence is radically curtailed by a simple change of position, from standing to sitting. Limiting people’s mobility or other bodily repertoire is a good way to stop them from being independent and effective in the social, political and existential senses too. Feminists have long been making this point about dress and behavioural codes forced on women in many cultures, including our own.
 
Merleau-Ponty’s focus on the body as the vehicle through which we experience the world helped me articulate the kinds of changes caused by illness. Take physical change. Physical change caused by illness is not just that. It does not simply limit mobility, ability to breathe or the function of kidneys or liver. It modifies the ill person’s embodied existence and hence her relationship to her world. It is not just the body of the ill person that changes, but her entire way of being and her way of negotiating the world.
 
I my case, as my disease progressed, I discovered, in a grotesque reversal of children’s development, more and more things I could not do. The joy with which we acquire a new ability, like riding a bicycle, is mirrored by the grave sorrow of discovering the loss of such a skill inflicted by illness.
 
With each month, as my lungs became increasingly damaged by the disease, I had to give up activities that my newly limited body could no longer accommodate. I had to unlearn certain habits, like breaking into a run when I was late or running up the stairs. These discoveries are terrifying, tinged with horror and fear of an ever-shrinking horizon. They cannot be limited to a body part or function. They force the ill person to restructure her whole life. The geography of the world we live in changes as stairs become obstacles, modest hills become mountains and a short walk to the shops an epic journey. Distances increase, availability reduces; the world is re-charted using new parameters. As my disease progressed, my world shrunk. My horizons closed in on me with an ever-expanding list of things I could no longer do, places I was now unable to visit, plans I had to give up.
 
The need to ask for help, the humiliation of failure, the shame of being perceptibly unable to do routine tasks, are all hard to stomach. The need to accommodate your body’s shrinking abilities is a forceful lesson in humility. That is hard, and even harder is the realisation that this is not a temporary disability. Unlike a sprained ankle, it will never go away. Learning to co-exist with a limited body, a damaged physical existence, is a harsh, if valuable, lesson.
 
Just as the geography of my world changed, my social world was also transformed. The first time I put on oxygen cannulas and looked at myself in the mirror, the thought of stepping outside the door seemed horrendous. And indeed, it sometimes is. People’s curiosity, stares and off-the-cuff remarks are a heavy burden. Sometimes complete strangers walk up to me and say ‘What’s wrong with you, then?’ Or ask for the name of my condition and then ask ‘So how long have you got?’ Occasionally, someone points an accusing finger at me and often, if I turn   round when walking down the street, I’ll see heads turned back, mouths muttering words of curiosity. You learn to avert your gaze, to become oblivious to expressions of surprise, pity or horror. You learn to ignore people’s requests for information, when they are driven by nothing but vulgar curiosity. You learn to be a spectacle while looking as if you don’t care.
 
With friends, things are more difficult still. Many could not stand the heat and left the kitchen. Some confessed they did not know what to say, so said nothing, stayed away. The terrifying discovery of illness is often accompanied by the harsh realisation that few people will want to understand what you are going through; fewer still will have the emotional ability to contain the sadness and struggle that are part of serious illness.
 
It is odd how well we ‘do’ happiness – how we like to celebrate, to bathe in the warmth of success, joy, celebration – banal as it may be; and how badly equipped we are to deal with sadness and difficulty. How impoverished our language, how depleted our emotional resources, how unable we are truly to be with others in their illness or their other tragedies.
 
The imperative to respect people’s privacy, to avoid asking invasive questions, to ‘give them space’, is often the flipside of tremendous loneliness, feeling that you are left to cope on your own with life’s biggest challenge.
 
A third change brought about by illness is to the ill person’s self-perception, life plans and values. When the future is uncertain, we may choose to live in the present and train ourselves not to worry too much about the future. We may change our plans and goals and find some of them – career achievement, financial gain or pleasing our family – are no longer ones we wish to pursue. Illness has the existential power to change how we view life and what we want from it. In this sense it can be a vehicle for change, making room for thoughts and values that normally take second place in the rushed pace of everyday life.
 
Rethinking our values is one of the things philosophy can best help us do. Indeed, philosophy has been my strongest ally in my struggle to live well with illness. The ancient philosophers, especially Epicurus, have much to teach us about acceptance of illness, physical pain and death. Epicurus emphasised the virtue of living in the present and enjoying it without letting anxiety about the future or yearning for the past encroach on our present pleasure. He said that what is good is easy to get, implying that we should choose carefully what we strive for. If we chase fame and fortune and fail to be happy, it is because we are chasing the wrong thing. The virtues of self-sufficiency and the thought that what is truly valuable comes from within can be a great aid to altering one’s projects and desires. If we can understand ourselves as limited creatures granted a brief existence, if we open ourselves to the possibility of living with an imperfect, even damaged body, we may be able to be ill and at the same time live well. And it is this ability to experience wellbeing despite – or with – illness that I aim to cultivate.
 
There are many ways in which we can break the social taboo and discomfort surrounding illness. It is a universal feature of life: we all get ill and eventually die. So why do we shy away from talking about it and making room for it in our culture?
 
One of my aims in writing and talking about illness is to change the way in which people in general and medical staff and students in particular view illness. There is a need to communicate the experience of illness so that others can understand it and use this understanding to help and care for the ill. It is the experience of illness and of fearing death that I would like to make room for, as an antidote to existing attitudes that constrain our thinking about these important issues.
 
Dr Havi Carel is a senior lecturer in philosophy at UWE, Bristol and is the author of Illness, published by Acumen as part of the Art of Living series.