Chronic Illness

There is considerable variability among chronic conditions in their severity, symptoms, and the extent to which they impose limitations on their victims. Some are relatively mild "lived-with" conditions that require lifestyle changes and/or compliance with medical regimens, whereas others are severe, life-threatening, and/or degenerative. In either case, the first step in living with chronic illness is emotional acceptance of the diagnosis and its implications. The diagnosis of chronic illness can generate intense emotional distress in patients and their families. Parents of chronically ill and/or disabled children often experience shame and guilt, and these feelings are exacerbated if they feel responsible for the condition. Their emotional distress is often manifested as feelings of extreme vulnerability, helplessness, and uncertainty over the future (Cohen 1993). As the mother of a fifteen-year old diabetic son said: "I was completely devastated, I was—just really couldn't believe it, like the rug had been pulled out from under me" (Williams 2000, p. 262). In most cases, these feelings wane as individuals accept the diagnosis and begin to cope with its implications. Some research, however, challenges the notion that people move through a series of stages that culminate in emotional acceptance of the illness. Parents may experience chronic sorrow, a "continuous sense of sadness that does not exhibit stages such as shock, anger, and guilt" (Shannon 1996, p. 322). Others deny the diagnosis for an indefinite period of time—often years. For example, a study of families with children who have sickle-cell disease found that mothers denied the diagnosis for a number of reasons—fear that it was racially motivated, the belief that their children were not like others who had the disease, and because they did not want to face the reproductive implications of passing the disease on to future children (Hill 1994). Although denial is typically seen as maladaptive, some research has indicated that denial can have beneficial effects, such as reducing psychological distress and allowing people to continue to participate in important roles and activities (Handron 1993).

Depending on the nature and severity of the condition, living with a chronic illness can prove extremely challenging. Psychologically, people with chronic illnesses experience a number of fears, for example, the fear of keeping their body and self-esteem intact, of losing love, relationships, and the approval of others, and of pain and discomfort (Miller 2000). Constant, recurrent, and/or unpredictable episodes of pain often cause feelings of loss of control. This pain can be constant and all-consuming, making symptom management and participation in everyday activities difficult. Peter E. S. Freund and Meredith B. McGuire (1991) have noted that chronic pain can jeopardize social relationships and lead to isolation, as it often invokes invalidating responses from others. The pain experienced by chronically ill persons often has no organic basis and cannot be verified medically, so others may doubt its existence. This can lead to loss of social relationships with others, as the empathy and support of friends and relatives begins to wear thin. Chronically ill people also have to contend with medical treatments and their side-effects, inexplicable remissions and exacerbations of the disease, and changes in lifestyles, activities, roles, and relationships. Some changes are relatively minor; however, others are substantial and are often experienced as a series of losses—of freedom, of hobbies, of employment, of physical appearance and abilities, and even of friendships. Many cause a loss of control over the body, which can lead to stigma and devaluation. In describing living with a chronic respiratory illness, characterized by lack of energy and breathlessness, Clare Williams (1993) sees the illness as causing "dwindling social and recreational lives; social isolation; problems of social interaction, stigma, legitimacy and the tolerance of others towards the condition; the threat or reality of 'dependency' . . . and problems pertaining to family life" (p. 130).

Chronic illness is accompanied by a great deal of uncertainty, since even with the best medical care, its course and severity can vary from patient to patient. Mothers of children with sickle-cell anemia experienced considerable uncertainty over how the disease would affect their children, especially when the diagnosis was made prior to the manifestation of symptoms (Hill 1994). Rose Weitz (1990) interviewed persons who have AIDS and found uncertainty to be a major theme. People living with AIDS experience a number of uncertainties: uncertainty about the meaning of illness symptoms, why they had become ill, their ability to function the next day, whether they would be able to live or die with dignity, and whether their health regimens would prolong their lives or heal the disease. Because self-image is integrally tied to the body and a sense of having control over it, the self-image can be dramatically altered by chronic illness.