Taking time to smell the roses: Accounts of people with chronic fatigue syndrome and their struggle for legitimisation

Abstract

This paper examines some of the current themes around the contested illness Chronic Fatigue Syndrome. It is based on a review of the biomedical literature, both current and historical, and draws from interviews with sufferers of the condition. The paper first outlines some of the propositions underlying the current biomedical use of the general conception a of psychosomatic disorder, and then goes on to contrast these with the general themes in sufferers' personal accounts of the condition. The strategic use of possible historical antecedents by both sufferers and biomedicine further reveals how the chief claim to legitimate the condition is based on a need to describe the condition as a physical disease rather than psychological disorder. Though the issue of legitimisation is a central concern from both perspectives, the paper suggests that what sufferers seek is recognition for their subjective experience in a lived world, and that this will always be at odds with a medical discourse based on the principle of an objective reality to disease.

The social construction of contested illness legitimacy: a grounded theory analysis

“…While the narratives of individuals with contested illnesses reflect these themes, their stories are different from those of other chronically ill individuals in a significant way. Contested illness sufferers struggle to explain the medical authenticity of their illnesses (Abbey and Garfinkel, 1991;Cohn, 1999;Horton-Salway, 2001;Hyden and Sachs, 1998;McCormick, 2000;Moss-Morris and Petrie, 2000;Munson, 2000;Tucker, 2004). Given the disagreement that exists as to the underlying cause of these illnesses, questions and judgments regarding illness origin and the validity of complaints are often in the narrative forefront.…”

“…Some have done so by focusing on the structural characteristics of contested illness stories, describing the kinds of knowledge and values they encode (Abbey and Garfinkel, 1991;Cohn, 1999;Hyden and Sachs, 1998;McCormick, 2000;Munson, 2000). Other researchers have investigated the rhetorical work that individuals with contested illnesses perform within their narratives (Horton-Salway, 2001; Moss- Morris and Petrie, 2000;Tucker, 2004).…”

Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis

“…Similar to previous research by Hart and Grace (2000), one of the participants was reluctant to discuss fatigue, per se, but rather conceptualised the notion as a lack of something more concrete, in this case stamina. Furthermore, as in the Cohn (1999) study, the participants described their predominate symptom in terms of energy levels, where an individual is allocated a set amount and any expenditure that exceeds this amount will result in ill health. Equally, the description of CFS/ME symptomatology as fluctuating in nature (Ware, 1999) was also apparent in the present study.…”

Fatigue in adults with post-infectious fatigue syndrome: a qualitative content analysis

“…The unpredictability of good and bad days resulted in the inability to control daily life [ 11 ]. The illness had inflicted a disruption between the body and the self [ 16 ]. The body had become an opposition to the self and was no longer trustworthy or reliable [ 17 ].…”

“…The body had become an opposition to the self and was no longer trustworthy or reliable [ 17 ]. The desire to return to the pre-illness lifestyle conflicted with the need to take care of the ill body, having awareness of the body, and respecting its limits and needs [ 16 ]. Fatigue was perceived to be a whole-body experience in which body and self interacted [ 18 ].…”