Illness

Definition


Illness is defined as "the subjective experience of symptoms and suffering." This experience of illness can also "motivate changes in behavior to alleviate discomfort."[1] Illness is culturally constructed because it is about how we perceive, experience, and cope with a disease or condition. It "represents personal, interpersonal, and cultural reactions to disease or discomfort. It is shaped by cultural factors governing perception, labeling, explanation, and valuation embedded in a complex family, social, and cultural nexus."[2] There are a number of symptoms and expressions of illness which will vary cross culturally. Disease is not synonymous with illness, but is what a biomedical doctor diagnoses based upon the symptoms of one's illness. Biomedical doctors often dismiss the concept of illness and focus on the disease model, which simplifies the problem to recognizing and treating the cause of sickness. Some are critical of this approach, saying doctors aim to cure the disease instead of healing the person as a whole. It is possible, too, that no disease accompanies the illness described by the patient.

As the following examples will explain, many people are unwilling to accept their feelings of illness, and thus do not assume a sick role. To aid in this decision making and to better understand their illness, one may consider the following questions:
1. What has happened?
2. Why has it happened?
3. Why to me?
4. Why now?
5. What would happen if nothing was done about it?
6. What should I do about it or whom should I consult for further help?[3]


History


Discussion of the illness/disease models by anthropologists began in the late 1960s and early 1970s. Patient dissatisfaction with medical care exposed the need to consider illness and disease as two separate entities. When physicians are concerned solely with recognizing and treating a biomedical disease, there is a disconnect between patient and practitioner understanding, leaving many questions unanswered. Without clear understandings on the part of patient and physician, patients may not comply with prescribed treatment, resulting from the physician failure to examine the illness holistically.


Arthur Kleinman
Arthur Kleinman
Arthur Kleinman proposed the now classic definitions of illness and disease back in the 1980's. According to his perspective, illness is the "innately human experiences of symptoms and suffering". In other words, illness comprises all of the ways that "the sick person and the members of the family or wider social network perceive, live with, and respond to symptoms and disability". Illness is always shaped by the individual culture of the afflicted, and due to the unique story of each individual person, the experienced illness is always distinctive. On the other hand, disease is the way biomedical practitioners view afflictions. Absent of all cultural implications, this view looks at disease "only as an alteration in biological structure or functioning". As stated by Kleinman, by ignoring the cultural elements and ramifications of the disease, "something essential to the experience of chronic illness is lost; it is not legitimized as a subject for clinical concern".[4]


Examples


The symptoms of illness are not always consistent throughout the course of an illness. Political ecologist, Thomas Leatherman, observes in Nuñoa, Peru, that depending on one's acceptance of a sick role, or the chance they may become more vulnerable in the eyes of others based on their illness. Factors which influence these symptom adjustments can include location and cost of care, social status, gender and ethnicity. In a place where economic stability depends on the household labor force, there are worse times for one to be sick than others. Periods of planting and harvesting are essential to lucrative production, it is possible that a family member will "postpone" their acceptance of the sick role (which would confirm their being ill) until after these "critical" times have passed.[5]


Another example of how differently culture constructs illness is Debilidad, a condition expressed by the members of the town of Churgurpampa, in Northern Peru. Striking mostly women during important periods of reproduction in their lives (menarche, child bearing age and menopause/post reproduction), symptoms include "headache, chills, numbness, dimmed eyesight, dizziness, sleep disorders, loss of appetite and aching or agitated heart." Because this condition is not biomedically recognized, it is generated internally within the sufferers, who believe it is due to a "host of physiological and emotive events and conditions such as childbirth, death of a child, sadness, dissipated energy from hard work, poverty, blood loss and more."
Just as in the previous example, Churgurpampan life is marked by production and reproduction, where males and females both have responsibilities to uphold. Women are to produce children (in equal male to female sex ratios, ideally) who labor for their father, who is mainly responsible for bringing "food, fuel and goods" into the home. Success in production and reproduction (which are interdependent on one another) creates prestige in the community and reflects well upon the entire family.
For women suffering from Debilidad, there is a feeling of failure to fulfill a role once they have completed reproduction, as if they are now expendable within their family and community. In the great majority of cases where men and children complain of Debilidad, there is also woman in their household who is suffering. Older men are more likely to suffer Debilidad following a successful lifetime of production. Thus, Debilidad is an illness that is defined culturally, socially, even can even be constructed through others living within the household unit. Because Debilidad is experienced and understood differently between gender and age, it serves as an example of an embodied illness as well.[6]
While illness often refers to the subjective effects of a disease, people can still experience illness in the absence of any biomedical disease. For an example of how the experience of illness is shaped by experienced and cultural influences, one can look to Andrew Buckser's article on Tourette Syndrome. People with Tourette Syndrome express vocal and physical tics, some of which change throughout a person’s life, while others are permanent. In American culture, these tics are stigmatized and are often thought to signify insanity, while in reality the disease is primarily physical with few psychological effects. Because of the way that Tourette Syndrome is perceived in American society, those suffering from the disease try to alter their symptoms to therefore change the way they are perceived by others. People may try to contain tics until others are not looking, or use less noticeable tics to prevent the onset of obvious ones. The following is a video that shows the way a girl with Tourette Syndrome experiences her illness due to the response of those around her.[7]




Case Study


As explained by Nancy E. Waxler, illness is manifested differently across cultures despite often stemming from the exact same disease as defined by biomedicine. This is certainly the case with leprosy, which has the same causes, symptoms, and treatments for each patient that contracts the disease. However, the cultural construction of the illness varies from culture to culture. In essence, it appears that the severity of the negative impact of the disease on the life of a patient is often dependent on the social reaction of the community and the cultural response of the patient. In other words, if the disease is highly stigmatized, the patient will suffer from being socially ostracized in addition to coping with the physical symptoms. Conversely, in communities where the disease is relatively accepted or tolerated, patients are often able to live ordinary lives. This is demonstrated in a cross-cultural comparison of leprosy patients in Addis Ababa, Ethiopia and those in the United States.

In Ethiopia, among a group of one hundred leprosy patients, one-fifth had been turned away from their households by their own families or had made the decision to leave their own homes. Fifty percent of these patients were divorced after their diagnosis of leprosy, and a third of those who did not get divorced chose to refrain from sex with their partner. Many still went to church, but did not enter the building for fear of rejection by their community. Sadly, another one-fifth one these patients became urban beggars. The additional suffering experienced by these patients is due in large part to the stigma that is attached to leprosy in this community. People inAddis Ababa are terrified and disgusted by those with leprosy, and so those who contract the disease also have this social stigma to contend with. Furthermore, most of these patients actually take themselves out of their communities, reflecting the "fatalism of the Ethiopian peasant". Thus, their illness is, at least in part, culturally constructed.

In contrast, while leprosy patients in the United States also face possible rejection from the community, their response is often very different. A group of American lepers in Carville, Louisiana were studied and were found to have taken a more aggressive approach to their illness. Rather than accepting the social stigma toward leprosy that still exists within American society, they decided to reject the outdated public perceptions. Reflecting the American cultural value of fighting back rather than acting as victims, these patients took charge of their role as leprosy patients and set out to educate the public on the misconceptions of the disease. In this way, they redefined their illness, became advocates instead of victims and gained the respect of the community at large. As noted by Waxler, they worked to develop "a new set of beliefs about leprosy, beliefs that are designed to replace the 'old' ideas that justified stigma".[8]

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Additional Resources


Besides varying cultural understandings of health, illness and disease, there are number of factors which can cloud patient to doctor communication, including language differences, mistrust of Western medicine, religious regulations, stereotypes and biases. Programs teaching cross cultural understanding and guides to becoming a cultural broker are essential during this time of rapid globalization.



References


  1. ^ Wiley, Andrea S., and John S. Allen (2009) Medical Anthropology: A Biocultural Approach. New York: Oxford University Press.
  2. ^ Kleinman, Arthur, Leon Eisenberg and Byron Good (1978) Culture, Illness and Care: Clinical Lessons From Anthropologic and Cross-Cultural Research. Annuals of Internal Medicine 88(2):251- 258.
  3. ^ Helman, Cecil G. (1981) Disease versus illness in general practice. Journal of the Royal College of General Practitioners 1981(31):548-552.
  4. ^ Kleinman, Arthur (1988) The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
  5. ^ Leatherman, Thomas (2005) A Space of Vulnerability in Poverty and Health: Political-Ecology and Biocultural Analysis. Ethos 33(1):46-70.
  6. ^ Oths, Kathryn S. Debilidad: A Biocultural Assessment of an Embodied Andean Illness. Medical Anthropology Quarterly 13(3):286-315.
  7. ^ Buckser, Andrew (2009) Institutions, Agency, and Illness in the Making of Tourette Syndrome. Human Organization 68(3):293-306.
  8. ^ Waxler, Nancy E.
    (1998) Learning to Be a Leper: A Case Study in the Social Construction of Illness. Understanding and Applying Medical Anthropology. [compiled by] Peter J. Brown. Mountain View, CA: Mayfield Publishing Company (1998): 147-157.