The Illness Experience
The experience of an illness is determined by what illness means to the sick person. Furthermore, illness refers to a specific status and role within a given society. Not only must illness be sanctioned by a physician for the sick per- son to assume the sick role, but it also must be sanctioned by the community or society structure of which the person is a member. Alksen, L., Wellin, E., Suchman, E., et al. (n.d.) divide this experience into four stages, which are suf- ficiently general to apply to any society or culture.
The first stage, onset, is the time when the person experiences the first symptoms of a problem. This event can be slow and insidious or rapid and acute. When the onset is insidious, the patient may not be conscious of symp- toms or may think that the discomfort will eventually go away. If, however, the onset is acute, the person is positive that illness has occurred and that im- mediate help must be sought. This stage is seen as the prelude to legitimization of illness. It is the time when the person with a sore throat in the preceding discussion may have experienced some fatigue, a raspy voice, or other vague symptoms.
In the second stage of the illness experience, diagnosis, the disease is iden- tified or an effort is made to identify it. The person’s role is now sanctioned, and the illness is socially recognized and identified. At this point, the health care providers make decisions pertaining to appropriate therapy. During the period of diagnosis, the person experiences another phenomenon: dealing with the unknown, which includes fearing what the diagnosis will be.
For many people, going through a medical workup is an unfamiliar experi- ence. It is made doubly difficult because they are asked and expected to relate to strange people who are doing unfamiliar and often painful things to their bodies and minds. To the layperson, the environment of the hospital or the provider’s office is both strange and unfamiliar, and it is natural to fear these qualities. Quite often, the ailing individual is faced with an unfamiliar diagnosis. None- theless, the person is expected to follow closely a prescribed treatment plan that usually is detailed by the health care providers but that, in all likelihood, may not accommodate a particular lifestyle. The situation is that of a horizontal-vertical relationship, the patient being figuratively and literally in the former position, the professional in the latter.
During the third stage, patient status, the person adjusts to the social aspects of being ill and gives in to the demands of his or her physical condition.
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The sick role becomes that of patienthood, and the person is expected to shift into this role as society determines it should be enacted. The person must make any necessary lifestyle alterations, become dependent on others in some cir- cumstances for the basic needs of daily life, and adapt to the demands of the physical condition as well as to treatment limitations and expectations. The environment of the patient is highly structured. The boundaries of the patient’s world are determined by the providers of the health care services, not by the patient. Herein lies the conflict.
Much has been written describing the environment of the hospital and the roles that people in such an institution play. As previously stated, the hospital is typically unfamiliar to the patient, who, nevertheless, is expected to conform to a predetermined set of rules and behaviors, many of which are unwritten and undefined for the patient—let alone by the patient.
The fourth stage—recovery—is generally characterized by the relinquish- ing of patient status and the assumption of prepatient roles and activities. There is often a change in the roles a person is able to play and the activities able to be performed once recovery takes place. Often, recovery is not complete. The person may be left with an undesirable or unexpected change in body image or in the ability to perform expected or routine activities. One example is a woman who enters the hospital with a small lump in her breast and who, after a surgery, returns home with only one breast. Another example is that of a man who is a laborer and enters the hospital with a backache and returns home after a lami- nectomy. When he returns to work, he cannot resume his job as a loader. Obvi- ously, an entire lifestyle must be altered to accommodate such newly imposed changes.
From the viewpoint of the provider, this person has recovered. His or her body no longer has the symptoms of the acute illness that made surgical treat- ment necessary. In the eyes of the former patient, illness persists because of the inability to perform as in the past. So many changes have been wrought that it should come as no surprise if the person seems perplexed and uncooperative. Here, too, there is certainly conflict between society’s expectations and the per- son’s expectation. Society releases the person from the sick role at a time when, subjectively, the person may not be ready to relinquish it.
Table 4–1 is a tool designed for the assessment of the patient during the four stages of illness. Originally designed as a sociological measuring tool, the material has been altered here to meet the needs of the health care provider in achieving a better understanding of patient behavior and expectations. If the provider is able to obtain answers from the patient to all the questions raised in Table 4–1, understanding the patient’s behavior and perspective and subse- quent attempts to provide safe, effective care become easier.
Another method of dividing the illness experience into stages was developed by Edward A. Suchman (1965). He described the following five components:
1. The symptom experience stage. The person is physically and cogni- tively aware that something is wrong and responds emotionally.
Table 4–1 The Patient’s Point of View: A Tool for the Personal Assessment of the Patient during the Four Stages of Illness