Caught up in Care: Crafting Moral Subjects of Chronic Fatigue (original) (raw)

Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox

Medical Humanities, 2019

Contemporary medicine distinguishes between illness and disease. Illness refers to a person’s subjective experience of symptoms; disease refers to objective bodily pathology. For many illnesses, medicine has made great progress in finding and treating associated disease. However, not all illnesses are successfully relieved by treating the disease. In some such cases, the patient’s suffering can only be reduced by treatment that is focused on the illness itself. Chronic disabling fatigue is a common symptom of illness, for which disease-focused treatment is often not effective, but for which illness-focused treatments (psychological or behavioural) often are. In this article, we explore a controversy surrounding illness-focused treatments for fatigue. We do this by contrasting their acceptance by people whose fatigue is associated with a disease (using the example of cancer-related fatigue) with their controversial rejection by some people whose fatigue is not associated with an esta...

'Stories' of chronic fatigue syndrome: an exploratory discursive psychological analysis

Qualitative Research in Psychology, 2004

This study sought to analyse how knowledge of the controversial illness, known among other names as Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), is rhetorically constructed in the accounts of four sufferers. A discursive psychological approach was adopted, to analyse how sufferers of CFS use their discourse to actively represent notions of blame and accountability and their stake and interest, in situated illness narratives. The themes identified all serve to construct CFS as a legitimate organic illness. By constructing CFS in this way, the sufferers are able to position themselves as legitimately ill, and thus avoid the stigma and threats to their identities that being diagnosed as suffering from a psychological disorder could bring.

Suffering in a productive world: Chronic illness, visibility, and the space beyond agency

American Ethnologist, 2010

Is coping with illness really a matter of agency? Drawing on ethnographic research among people with rheumatological and neurological chronic diseases in the United States, I argue that patients’ coping strategies were informed by a cultural expectation of productivity that I call the “John Wayne Model,” indexing disease as something to be worked through and controlled. People able to adopt a John Wayne–like approach experienced social approval. Yet some people found this cultural model impossible to utilize and experienced their lack of agency in the face of illness as increasing their suffering, which was made all the worse if their sickness was invisible to others. Unable to follow the culturally legitimated John Wayne model, people fell into what I call the “Cultured Response”—the realm beyond the agency embedded in cultural models, in which people do not resist but embrace as ideal the cultural expectations they cannot meet and that oppress their sense of value in the world. [suffering, cultural models, agency, chronic illness, United States, cultural anthropology, medical anthropology]

Constructions of chronic illness

International Journal of Nursing Studies, 1998

lnterest in chronic illness as an area for research and writing is increasing across a diverse range of disciplines. Initially of interest to medicine, chronic illness is now studied by social scientists, psychologists and health professions (for example, nurses). Predominantly, the individuals affected by particular chronic illnesses have been the central interest in the body of work relating to chronic illness. The physical, psychological and social effects of chronic illness feature as major emphases for distinguishing individual variations from the 'norm'. By exploring current constructions of the major perspectives of chronic illness discourses of normalisation, individualism and science are revealed as privileged and dominant in nursing practice. 10

Medicalisation reconsidered: toward a collaborative approach to care

Sociology of Health and Illness, 1996

The concept of 'medicalisation' has informed the sociology of health and illness for several decades. Typically, it has been discussed with critical connotations, although some commentators have suggested that it is not unequivocally negative. This paper seeks to clarify the concept, suggests that medicalisation can be both helpful one/unhelpful, and identifies the characteristics of beneficial medicalisation. Using data from doctors and patients who are dealing with a refractory, relapsing and disabling condition -Chronic Fatigue Syndrome -we explore the impact of medicalisation in different forms on the participants in the medical,encounter. Both doctors and patients were; at times, uneasy about the possibility of a self-fulfilling prophecy through which a medical diagnosis might generate deleterious consequences from a comparatively trivial complaint. However, when such motivations prompted doctors to withhold information (such as a suspected diagnosis), the results were generally increased difficulties for the patient. Whether intentional or accidental, meaf/ca/dominance iniany form consistently generated problems for patients. But when medical explanations were mobilised to enhance the coherence of the patient's experience of symptoms, patients found medicalisatipn to be helpful. Patients whose doctors took their symptoms seriously gained legitimation which helped them in a range of social relationships. They also received support for their efforts at self-management. Legitimacy, coherence and support are all necessary components for improved well-being, and doctors can supply such assistance even in the absence of [Unequivocal diagnosis and proven therapeutic interventions.