Chronic Illness

Control over acute, infectious illnesses has led to longer life spans for many populations, but also growing rates of chronic illness. Chronic illnesses, however, are not randomly distributed in populations. Although level of economic development is a major predictor of health and life span, patterns of sickness and death also vary within countries based on factors such as social class, age, gender, and race. Wealthy and middle-class people in all countries have better health profiles and longer life spans than those who are less affluent (Fosu and Subedi 1996; Reid 1998) and, in both developed and developing countries, high levels of economic inequality predict higher rates of early death (Lobmayer and Wilkinson 2000). The bulk of the disease burdens falls to the poor and lower classes in all countries, as they are most likely to experience malnutrition, poor living and working conditions, and stressful lives. Acquired immunodeficiency syndrome (AIDS) is a chronic illness that has reached epidemic proportions in parts of Africa, and poverty among some groups in the United States has been associated with a resurgence of acute, infectious illness. Age is also a crucial variable in the distribution of chronic illnesses, as longer life spans help account for the prevalence of chronic conditions. In most developed countries, the number of elderly (over age sixty-five) people has grown tremendously. Among the elderly, a few chronic illnesses, specifically stroke, cancer, and heart disease, are the leading causes of death, whereas arthritis and diabetes cause most sickness (Weitz 2001). This pattern is reversed for children, however, who are affected by more than two hundred different chronic conditions and disabilities (Ireys and Katz 1997). At least partially because they live longer, women in developed countries have higher rates of chronic illness than do men, although they are less likely than men to have life-threatening chronic illnesses. Finally, race-ethnicity affects health and access to health care, with marginalized racial groups experiencing more sickness and early death than dominant racial groups. Much of the racial difference is due to higher levels of stress and poverty, and less access to health care (LaVeist 1993; Williams 1990). As Wagar Ihsan-Ullah Ahmad (2000) notes, when racial minorities seek health care they are more likely to have their citizenship rights questioned, face language barriers, be blamed for their own health problems, and receive inadequate medical care (Ahmad 2000; LaVeist 1993).

The proliferation of chronic illness challenges the medical model of illness and the current organization and focus of medical care. The medical model of illness has traditionally focused on discovering the link between specific illnesses and their biological agents (e.g., "germs"). Chronic illnesses, however, are rarely the result of a specific pathogen. In many instances the symptoms and course of chronic conditions are variable and ambiguous, so getting an accurate diagnosis can be a long and difficult process. Persons with chronic illnesses often ignore the illness, self-medicate, and/or unconsciously adapt to the symptoms of the disease, especially if they are relatively mild (Charmaz 1991). Most symptoms of illness are treated without the assistance of medical experts: It is usually only when symptoms become persistent, disruptive, visible, and difficult to explain that physician care is sought (Mechanic 1995). Even after medical attention is sought, the gradual and sporadic appearance of symptoms or the unusual nature of the disease may make an accurate and early diagnosis difficult (Hill 1994). In the end, the patients may be diagnosed with diseases they have never heard of. As one patient pointed out:

After being sick, or knowing there was something wrong for nearly 17 years, I got a diagnosis of Progressive Systemic Sclerosis, which I had never heard of before. But I was so excited, I was so thrilled for this man to be telling me I had this disease! It was stupid, you know—to have an answer. It didn't matter that it is a potentially fatal disease. None of that stuff mattered! (Thorne 1993, p. 26)

The medical model of illness also has been primarily oriented towards an acute curative model of care that emphasizes emergency treatment and the use of advanced technologies (Thorne 1993). Chronic illnesses, however, are often long-term, incurable, and only rarely can they be prevented by direct medical interventions. The causes of chronic illnesses are often complex and/or ambiguous: Some, such as sickle-cell anemia (found mostly among Africans and African Americans) and Tay-Sachs disease (found among Jews of East European descent) have a genetic component. Others are tied to lifestyle factors or a combination of genetic and environmental factors. Sedentary lifestyles, tobacco and drug use, poverty, and exposure to environmental toxins all affect the likelihood of acquiring a chronic illness. The focus of care for most chronic conditions is managing the illness rather than healing it, yet patients often find no consistent relationship between adhering to medical advice and regimens and the course of the disease. Persons with sickle-cell disease, for example, are often advised to avoid physically rigorous activities, but as one victim pointed out:

I remember getting a [pain] crisis and I weren't doing nothing strenuous, and I weren't in the cold, and I wasn't doing nothing to bring it on. Basically I sat down and done nothing and I was still ill so I just couldn't do nothing to prevent it. That's what was making me so fed up with it. I mean, I don't know, what else are you supposed to do? (Atkin and Ahmad 2000, p. 51)

Because neither patient nor doctor experiences the gratification of a complete recovery, chronic illnesses have been described as medical failures. Patient compliance becomes a major issue because many medical therapies are expensive, inconvenient, and only marginally effective. The most salient feature of chronic illness is its permanency.