The Patient's Experience of Illness

A healthy person takes his body for granted. It does, of course, impose limitations on what he or she can do, but the person does not have to bring into consciousness the everyday acts of living. As I write this, I am not conscious of the coordinated movements of my hand. The sick become very much aware of the body and the limitations it imposes. They have to think about activities that previously were carried out below the level of awareness. Will I manage this flight of stairs? Will I be able to get on the bus to do my shopping? Bodily functions, which previously formed the background to one's world, become the foreground; the rest of world recedes into the background. In health, the body and the self are one: we are our bodies. In sick ness, the body becomes something other than the self, something alien, over which the self has limited control.

Physicians see illness in terms of a disturbance of bodily function. Patients see it as a disruption of their "being in the world".

"Critical illness leaves no aspect of life untouched. The hospitals and other special places we have constructed for critically ill persons have created the illusion that by sealing off the ill person from those who are healthy, we can also seal off the illness in that ill person's life. This illusion is dangerous. Your relationships, your work, your sense of who you are and who you might become, your sense of what life is and ought to be - these all change, and the change is terrifying." (Frank, 1 991; p. 6)

In Kay Toombs' words, "A patient does not so much have an illness as exist an illness." She takes to the physician a problem of existence but finds the physician's attention directed to her body rather than to her problems with existence. The patient feels "reduced to a malfunctioning biological organism" (Toombs, 1992).

Chronic disease, especially if it brings successive losses of independence and control, often engenders profound sensations of grief. With grief come the feelings associated with it: sadness and anger, guilt and remorse. If the illness is one that c arries a stigma - such as epilepsy, cancer or AIDS - then feelings of rejection may add to the grief. Anger may be projected onto the physician, who may be viewed as responsible for delays in diagnosis or errors in management. Given the insidious nature of many chronic illnesses and the difficulties of early diagnosis, family physicians are especially liable to encounter this level of hostility. When the patient feels responsible for causing his or her own disease, the anger is turned inward. Those phy sicians who would like to convince people that they are responsible for their own healing should consider the consequences in guilt and remorse if their efforts do not improve their health or prevent deterioration.

Fear and anxiety are ever present in illness, even in minor illness. Fears are many and varied, rational and irrational. Physicians cannot assume that they know what patients' fears are until they make an effort to discover them. A patient may have come to terms with the fact that she has progressive cancer but may still fear that her death will be painful and distressing. Or she may fear for the future of her family. Dying patients may have a fear that they will be abandoned by their doctor if t hey complain too much. They then become reluctant to ask for a visit when they need one, and tolerate pain which could be controlled. This is why regular, rather than "on request" visits are so important for dying patients.

A number of physicians, most recently Eric Cassell (1990), have observed that illness may impair the faculty of reason. The most rational of people may become irrational, and even superstitious. This impairment of judgment is rarely considered when we are enjoined to give patients responsibility for decisions about their treatment. As an ethical principle, this is no doubt correct. In real life the issue is rarely so clearly defined.

The threats to self that illness brings - the disruption, loss of autonomy, loss of control, and loss of confidence - make sick persons very vulnerable. They not only feel vulnerable, they are vulnerable. This vulnerability makes it impossible for t he relationship between the doctor and the sick patient to be an equal one, however much we may wish it to be so. This puts a great responsibility on physicians to respect patients' vulnerability and to use their power responsibly and with compassion.

Kay Toombs has commented on the changed sense of time and space that illness induces. The natural rhythms of the body - the rhythms of eating, sleeping, working, resting - are disturbed. The patient loses the sense of the future as a time of possibi lities. Simple tasks like dressing and tying shoelaces may occupy a large part of the day. Hull (1990, pp. 78-79) says of his experience as a blind person:

"Sighted people can bend time. For sighted people, time is sometimes slow and sometimes rapid. They can make up for being lazy by rushing later on... For me, as a blind person, time is simply the medium of my activities. It is the inexorable conte xt within which I do what must be done. For example, the reason why I do not seem to be in a hurry as I go around the building is not that I have less to do than my colleagues, but I am simply unable to hurry."

"Perhaps all severe disabilities," says Hull, "lead to a decrease in space and an increase in time." Toombs (1992, p. 67) remarks on how illness changes the character of one's sense of space. "... objects or locations [the bathroom for example] whic h were formerly regarded as "near" are now experienced as "far" ..." "Spaciality ... constricts in the sense that the range of possible actions becomes severely circumscribed. Rather than representing the arena of possible action, space is encountered as the restriction of possibilities."

Toombs (1992, p. 66) writes of the "profound effects of the loss of upright posture." A person in a wheelchair at a social gathering, being low on the ground, may be treated like a child, in that people talk to their spouse about them, as if they were not able to speak for themselves.

In mental illness, the threat to the self is terrifying. The experience of dementia, depression, schizophrenia or anxiety may produce the most intense suffering. The experience is not limited to those with severe mental illness. It is often surpris ing to find that patients who are mildly depressed will express fears of insanity.

An account of the experience of illness would not be complete without mention of the response to illness. People do triumph over their disabilities. The body has remarkable powers of compensation and adaptation. A newly defined self can emerge from suffering. Suffering engenders the kind of introspection that can add a new depth to the personality. Although the patient may have little control over the course of the illness, he or she is free to choose how to respond to it.

So far, we have been considering the experience of illness and disability in a person who was previously healthy. The process is one of alienation of the body from the self. The situation is different in those who are born with a disability. In the se, the disabled body is the lived body, from the very beginning. Rather than the body becoming alien to the self, the body, with its disabilities, is the self. With some disabilities such as deafness, the person enters a culture with a strong se nse of its place in the world. A child may resist a parent's attempts to correct some disability on the grounds that, if they corrected it, "it wouldn't be me." Rejection of the disability may be interpreted as rejection of the child. Harm may be done by attempts to correct "disabilities" which are themselves harmless variants. At one time, left handed children were forced to use their right hands. When a child has severe disability which can be corrected, the process of adaptation is the rever se of that in a person with an acquired disability. The child, whose body and self have grown within their limitations, has to develop a different way of "being in the world" - a world with wider horizons.

Although all sufferers from chronic disease and disability have something in common, each patient's story is an individual one. The experience of illness also varies with the course the illness takes: a sudden or gradual onset; a one time disability like stroke or injury, which then remains static; a progressively downhill course; or a process of remissions and relapses. Loss of vision, for example, is often a very long process ending in the state of blindness - a new way of being in the world. Joh n Hull (1992 pp 184-185), a university professor, describes his own experience:

"First, there was a period of hope which lasted for a year or eighteen months. It was brought to an end by the deterioration of sight during the summer of 1981, although even as late as the summer of 1982, when I was still seeing a few lights, colour s and shapes, I could not resist occasional flickers of hope.

Secondly, there was a period of business in overcoming the problems. This began about the summer of 1981, when visual work became impossible, and lasted until about the summer of 1984. It was not until Easter of 1985 that I began to have a feeling that I did not need any more equipment. A main drive to create a workable office system took place during 1982 and 1983. During this time, blindness was a challenge.

The third stage began some time in 1983, possibly late in the year, and lasted for about a year. This was the time when I passed through despair. These were the years during which my sleep was punctuated by terrible dreams, and my waking life was o ppressed by awareness of being carried irresistibly deeper and deeper into blindness.

The fourth and current period has begun since the autumn of 1984, i.e., since the recovery from the visit to Australia, during which time blindness had engulfed me. I began writing my book on adult religious education in October of 1984 and conclude d it in March of 1985.

For most of the time now my brain no longer hurts with the pain of blindness. There has been a strange change in the state or the kind of activity in my brain. It seems to have turned in upon itself to find inner resources. Being denied the stimul us of much of the outside world, it has had to sort out its own functions and priorities. I now feel clearer, more excited and more adventurous intellectually than ever before in my life. I find myself connecting more, remembering more, making more link s in my mind between various things I have read and had to learn over the years. Sometimes I come home in the evening and feel that my mind is almost bursting with new ideas and new horizons.

I continue to find deep need for that kind of sustenance. Even a single day without study, away from the possibility of learning something new, can precipitate a new sense of urgency and suffering. I still feel like a person on a kidney machine, bu t increasingly like a person who has managed to survive."

Primacy of the person has been mentioned as one of the fundamental principles of family medicine. To give primacy to the personhood of the patient requires that we attend very carefully to the meaning the illness has for him or her, not as an "add-on " after clinical diagnosis but as a central obligation. This has implications for our clinical method, which is discussed in Chapter 8.

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