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ILLNESS IS WORK: Revisiting the concept of illness careers etc with ME/CFS

Dolphin

Senior Member
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17,567
Free full text:http://journals.sagepub.com/doi/pdf/10.1177/1363459315628044

Sympathetic article.

ILLNESS IS WORK: Revisiting the concept of illness careers and recognizing the identity work of patients with ME/CFS

Jan Grue
University of Oslo, Norway

Abstract

The concept of careers has an extensive history in the sociology of health and illness. Among other things, the notion of a career has been used to describe the changing identities of patients diagnosed with mental illness, to identify distinct stages in the progression of various illnesses, and to recognize the cooperative efforts of hospitalized patients. However, the career concept may be reanalyzed as part of an analytical metaphor that makes salient both the agency of people with illnesses and the social structures in which they are enmeshed. This metaphor, ILLNESS IS WORK, can valorize and aid understanding of the identity work and actions of patients with chronic illnesses, particularly illnesses with a low degree of social recognition and medical prestige such as myalgic encephalopathy and chronic fatigue syndrome.

Keywords
chronic illness, disease prestige, identity, illness career, metaphor theory, myalgic encephalopathy and chronic fatigue syndrome
 

Dolphin

Senior Member
Messages
17,567
Disease prestige and hierarchies of valuation

The term disease prestige was coined to describe the informal hierarchical ranking of diseases among doctors (Album and Westin, 2008). Doctors consistently rank some diseases as more prestigious than others. Prestigious diseases appear to be related to medical specialties with high occupational prestige, but both the medical specialties and the diseases are in turn related to particular features of the diseases’ its location in the body and its typical patient. High-prestige diseases are often located in specific organs high up in the body, particularly the brain or the heart, while low-prestige diseases are often located low in the body or not in a particular organ. High-prestige diseases often strike patients who are young and male, while low-prestige diseases are more often typified by older, female patients. Low-prestige diseases are more often chronic and not acutely life-threatening.

Not only are some conditions seen as more prestigious than others, but different names for similar symptom clusters may carry different levels of prestige: more clinicalsounding diagnostic labels connote higher prestige (Jason et al., 2002).
 

Dolphin

Senior Member
Messages
17,567
Many common metaphors, with ILLNESS IS WAR as a prime example, have profound implications for how we frame complex phenomena. The notion that illness is a conflict confers a considerable degree of moral responsibility upon the patient, who is put in the position of having to either carry on or give up the fight. Moreover, ILLNESS IS WAR, when seen in conjunction with the hierarchies and mechanisms of disease prestige, has troubling implications for many people with chronic illness. Chronic illness presents the patient as well as the doctors with a battle that cannot be won and a fight that never ends.
 

Dolphin

Senior Member
Messages
17,567
Although the case of ME/CFS may turn out to have limited applicability as a template for illness career paths, it and the metaphor ILLNESS IS WORK shed further light on the disease prestige hierarchy. Somatic, unambiguously located diseases are at the top, while epistemologically problematic chronic conditions are at the bottom. If one does not have a disease at the top, then it would perhaps be wise to act as if one did—in other words, to dress for the job one wants rather than the job one has. This means, generally speaking, striving for medicalization (Conrad, 2008). The phenomenon is culturally pervasive, nowhere more so than in psychiatry. Ever since the DSM-III, psychiatry has striven toward medicalization, or, to put it another way, toward greater disease prestige by way of medicalization. It should not be surprising that patients have picked up on this trend, and that people who enter the ME/CFS diagnostic complex recognize that having a somatic illness is in many ways preferable to having a psychiatric illness. Greater presumptions of curability might be a factor, as might a lesser presumption by others that one is morally responsible for one’s condition—a presumption that continues to dog people with psychosomatically explained diagnoses.
 

Old Bones

Senior Member
Messages
808
Disease prestige and hierarchies of valuation

The term disease prestige was coined to describe the informal hierarchical ranking of diseases among doctors (Album and Westin, 2008). Doctors consistently rank some diseases as more prestigious than others. Prestigious diseases appear to be related to medical specialties with high occupational prestige, but both the medical specialties and the diseases are in turn related to particular features of the diseases’ its location in the body and its typical patient. High-prestige diseases are often located in specific organs high up in the body, particularly the brain or the heart, while low-prestige diseases are often located low in the body or not in a particular organ. High-prestige diseases often strike patients who are young and male, while low-prestige diseases are more often typified by older, female patients. Low-prestige diseases are more often chronic and not acutely life-threatening.

Not only are some conditions seen as more prestigious than others, but different names for similar symptom clusters may carry different levels of prestige: more clinicalsounding diagnostic labels connote higher prestige (Jason et al., 2002).


Yes, a sympathetic article, @Dolphin , thanks for posting. I also found this segment, which followed your quote above, interesting. It helps to explain some of the challenges ME advocates experience.

"In some cases, prestige is not in itself a very important factor, because it is impossible for patients to change both the kind of illness they have and the prestige level with which it is associated. The first of these facts will be changed mainly in cases of misdiagnosis, while the second fact will likely change rather slowly. There are cases in which diseases gradually lose their cultural stigma, with cancer as perhaps the most salient example (Mukherjee, 2010), but prestige levels appear to be sociocultural constructs that are relatively stable over time (Album 1991, Album and Westin 2008, Grue et al., 2015)."

Bolding is mine.
 

ahimsa

ahimsa_pdx on twitter
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1,921
@Dolphin

Thank you for posting the link and the extracts.

This is not the type of paper I ever thought I'd want to read but those extracts have intrigued me. So I have downloaded the paper and might actually read it in bits and pieces.

And I will definitely pass it on to a friend of mine who has a sociology degree and has ME/CFS (she's not on this forum).
 

Dolphin

Senior Member
Messages
17,567
@Dolphin

Thank you for posting the link and the extracts.

This is not the type of paper I ever thought I'd want to read but those extracts have intrigued me. So I have downloaded the paper and might actually read it in bits and pieces.

And I will definitely pass it on to a friend of mine who has a sociology degree and has ME/CFS (she's not on this forum).
I'm not saying it's the most insightful ever piece but it does capture some of the experience. A lot of it could be said with fewer words but I suppose you have to show you know what you're talking about in academic pieces.