create an environment to receive and share stories, and demonstrate patience that allows a trusting relationship to develop (Tom-Orme, 1988, 2006). This means accepting a view of health that is not merely related to biology and disease but one in which healing includes concepts of balance among the physical and social worlds, one’s emotions, social relations, mental state, and spiritual relations. Religious views often play an impor- tant role in determining how individuals relate to their malady and signifi cant others.
This classic notion of the sick role is too limited to encompass all of the social conse- quences of suffering from some malady. Many sick roles differ from the “ideal” sick role.
Parson’s classic (1951) conceptualization of the sick role is most appropriate in people suf- fering from diseases that are temporary and for which it is normal to expect full recovery. In patients with chronic degenerative diseases, there is no realistic expectation of recovery and relinquishing of the sick role. In many cases of chronic disease, there may not be a release from normal role obligations, although activities may be restricted. Parson’s conceptualiza- tion of the sick role excludes the expectations in many cases of mental illness, where the patient may not be exempt from social responsibilities. Rather, treatment of the mentally ill may involve expectations that they assume personal and social responsibilities previously neglected, and extension of sick-role exemptions may be far more limited.
The view that patients are not responsible once a physician has validated their disease is also only partially correct, especially for diseases for which it is believed that immoral behavior is responsible for the condition (see the section on AIDS below). Rather than being an inherent condition of the disease, the moral responsibility is culturally defi ned. In earlier periods, society viewed tuberculosis, epilepsy, and cancer as “shameful diseases”
in which people were responsible for succumbing to the condition. In contemporary Sick Role in Mexican American Culture
There are potential confl icts of Mexican American illness beliefs and sick role behaviors with those espoused by Western medicine, which emphasizes responsibility of the individual for his or her illness. In Hispanic disease theory, an individual is not responsible for being ill but is an innocent victim of external forces such as poverty, exposure, and supernatural causes. Approaches that blame the person for his or her condition, even if failure to seek care is contributory, alien- ate patients. For many Mexican Americans, illness is borne with dignity, and normal activities are continued. The sick role and the excuses from ordinary responsibilities it can provide may not be accepted because endurance of diffi culties with stoicism is an ideal value; both male and female roles encourage silent suffering. Men also reject the sick role because of machismo, which emphasizes tolerance of pain to work and support the family. A woman may not accept the sick role and seek medical care because of the expectation that she be strong and fulfi ll her obligations to her family. This is referred to as marianismo, a reference to the Virgin Mary and the ideals that she represents as a servant to her family. Consequently, religious ideals mean that a woman should not complain or take off from her responsibilities but instead persist in her service to others despite her own suffering and need for treatment. The silent suffering demanded by the ideals of the sick role may persist in the context of labor and delivery, where women may silently endure contractions. Many an obstetric nurse has noted a woman’s rapid change to a dramatic wailing and crying when the woman’s husband arrives. Such is the power of social context to affect our expressions of suffering.
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American society, addiction, venereal disease, and AIDS are often viewed as the result of moral transgression and, hence, fi tting punishments (see Singer, 1997, 2006). Consequently, the patient is not removed from responsibility, even though the sick role is ascribed. Even when personal responsibility is not viewed as a contributing factor, diseases are still often discussed as if we were responsible for our condition. Foster and Anderson (1978) discuss a number of common expressions that attribute this responsibility to the patient, such as
“What did you do to yourself?”
“You cut yourself, broke your leg, sprained your ankle, etc.”
“You caught a cold (or other disease).”
Sequences in Sickness Experiences
The experience of sickness, the social response to one’s experience of illness, has been suggested to follow distinguishable stages. Spector (1991) suggested that onset, diagno- sis, patient status, and recovery were suffi ciently general to apply to any culture. These idealized conceptions do not do justice to the diverse experience of maladies. The con- cept of onset is useless in patients with asymptomatic conditions. Not all ethnomedical systems offer diagnoses, as exemplifi ed in Finkler’s (1985a, 1994a) study of Mexican spiritualist healers. Just as an ill person may acquire the sick role without medical legiti- mization, not all people with medically validated disease will accept the sick role. The recovery phase is absent in patients with terminal illness or persistent pain. Even where there are similarities in major stages (Suchman, 1965), the stages are affected by cultural and social factors, producing cross-cultural variation in the experiences.
Experience of Symptoms The individual experience of changes, pain, discomfort, or other conditions that indicate that something is wrong varies in expectations and interpre- tations. It evokes varying emotional responses, including in some cultures ignoring or discounting symptoms. The behavior and opinions of others are important factors in seek- ing or postponing care and making selections among available options.
Assumption of the Sick Role As a person begins to share concerns about his or her health with others, there begins a provisional validation of the sick role that involves social support, exemption from certain habitual social expectations, and the direction of the person toward health care resources. Cultures differ in the conditions for which the sick role will be validated (e.g., is “fright” an acceptable disease to everyone?). Cultures also differ with regard to which exemptions from normal role expectations are allowed.
Medical Care Contact The medical contact stage involves efforts to validate the illness claim as disease and receive proper treatment. Decisions made at this stage vary consid- erably, even within the same society, where ethnic and class differences affect responses by both the ill person and the healer. Social and cultural norms frame whether appropriate responses to the ill person involve self-medication or professional treatment. Economic factors can make illness not merely a personal condition but a fi scal crisis involving others (e.g., family members) who may need to agree to treatment. For many, the search
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for resources is not with biomedicine but with family or ethnomedical traditions (see Chapter Five).
Dependent-Patient Stage Once under the care of a provider, patients enter a dependent stage in which they are expected to comply with recommendations and treatment.
Whether the condition is remediable or terminal determines whether the patient role is a temporary condition or a permanent condition of the self. The social consequences of diagnoses have effects on the experience of the condition.
Recovery or Rehabilitation Stage In remediable illness, the patient role is to be relin- quished on recovery and rehabilitation. Societies have rituals, ceremonies, and activities that indicate termination of the patient role. However, in some cultures, particular ill- nesses carry a social stigma that a person cannot escape (e.g., mental illness, cancer, and addiction).
Sickness Career
The concept of the sickness career recognizes that a series of interactions with others occurs over time and in defi nable stages (Twaddle, 1981). Becoming sick is a social pro- cess, one in which perceptions of and responses to impaired well-being are shaped by the behavior of signifi cant others. Although physicians may be offi cial arbitrators regarding the sick role, it is generally family, friends, and employers who legitimate the sick role, validate changes in an individual’s status, and accommodate to their implications.
Cultural, social, and personal factors affect people’s willingness to accept the sick role. Some do not want to adopt the sick role, and others liberally use it for sympathy, release from obligations, and assistance. The social benefi ts of the sick role may make African Americans and the Sick Role
The sick role may not be easily available to poor African Americans. A lack of resources for med- ical care and a fatalistic acceptance of conditions may preclude active intervention or preventive efforts and contribute to a tendency to endure discomfort. Utilization of self-care practices, prayer for religious intervention, lack of resources for health care, and fear of racist treatment in health care institutions often lead to delays in seeking treatment. Consequently, medical care is more commonly sought in emergency departments when crises occur. Even African Americans not actively involved in religious organizations may rely on religious coping in times of stress.
Religion may give hope and positive expectations or may “spiritualize” diffi culties, viewing problems as part of God’s plan and passively trusting God to take care of them. Seeking psy- chotherapy departs from African Americans’ traditional reliance on coping and management of diffi culties within one’s family. Consequently, entering into therapy and accepting the sick role as a psychiatric patient is a strong statement about perceived needs for help.
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patients ambivalent, wanting to maintain their sickness rather than eliminate it because of benefi cial effects such as
Primary gains, beginning with the relief of symptoms and associated unpleasant feelings, including diverting attention from other problems. The sick role may serve psychosocial needs, providing attention and concern from others, a use employed by those of marginal status and with weak social support.
Secondary gains of exemption from responsibility, including work, and special con- sideration from others. The sick role may relieve individuals from ordinary responsi- bilities and provide an excuse for personal failure and not meeting social expectations.
The sick role can alleviate blame for personal shortcomings, placing responsibility on the malady.
Tertiary gains, benefi ts others receive from a patient’s sickness (e.g., being a helper).
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Nancy Romero-Daza
Nancy Romero-Daza, Ph.D., from 1994 to 1998 worked at the Hispanic Health Council (HHC) in Hartford, Connecticut, as an ethnographer researching AIDS, violence, and other health issues and coordinating service units. In 1998 she joined the Department of Anthropology at the University of South Florida (USF) where she teaches medical anthropology and does research in HIV/AIDS and substance abuse among Latino and African American populations.
She is also interested in traditional healing practices and in women’s health issues.
Romero-Daza became interested in HIV/AIDS while conducting research on the use of tra- ditional medicine in Lesotho, Africa, and assisting with data collection on nutrition among women and children. The results of her work there emphasized the need to examine the spread of HIV/AIDS from a political-economic perspective that looks at the impact of social, eco- nomic, political, and cultural factors at both the local and international levels.
At the HHC, Romero-Daza was actively involved in various federally funded research projects related to HIV/AIDS prevention among injection drug users. In addition, she conducted several small-scale projects among African American and Latino (mainly Puerto Rican) injection drug users, crack cocaine users, and sex workers. These projects also addressed issues such as violence victimization, cancer prevention, and dietary practices among inner-city drug users.
Since joining USF in 1998, Romero-Daza has participated in various projects related to the health and well-being of Hispanics and African Americans. Besides different research, design, and implementation projects, she has conducted research on HIV/AIDS among Hispanic women who accompany their partners as migrant laborers in rural areas around Tampa. She has also studied the potential impact of tourism on the spread of STDs in rural Costa Rica, where she conducted a project in which she worked with forty women from four towns in creating culturally appropriate AIDS awareness materials for women and their families.
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Others, too, may receive benefi ts from providing care and the social prestige and material rewards it can provide, such as was provided by the care of leprosy. The sick role may enable individuals to manipulate others through obligations imposed on them by the sick role: for example, guilting the public into paying for unnecessary asylums and indi- rectly to support the Catholic Church. The sick role may serve religious ends in cultures where illness is seen as a consequence of wrongdoing and may serve as a punishment by which guilt is expiated and social consequences atoned. Suffering from illness as pay- ment for past misdeeds may evoke forgiveness from others.