Narrative Identities and the Management of Personal Accountability in Talk about ME: A Discursive Psychology Approach to Illness Narrative

Abstract

This article takes a discursive psychology approach to the analysis of illness narrative. The controversial topic of ME (myalgic encephalomyelitis), otherwise known as chronic fatigue syndrome (CFS), is used as a case study to examine the dilemmatics of illness talk. Using data from an ME narrative, I explore the complex and subtle discursive work performed by participants to show how attributional stories and identity formulations are linked together in a narrative that works to construct ME as a physical disease while countering potential accusations of malingering or psychological vulnerability. In working to counter such explanations, sufferers paradoxically implicate themselves in an interpretation of their illness as self-inflicted through overwork and mismanagement. In previous research, tales of frenetic lifestyles prior to the onset of ME have provided analysts (and journalists) with grounds for constructing their own attributional stories in the form of 'opt-out' or 'burnout' theories of ME/CFS. An ethnomethodologically informed discursive psychology provides a non-cognitivist approach to analysis which looks in detail at how sufferers themselves make sense of ME as a practical activity and how their identities are constructed as part of that process.

Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study

“…The scepticism displayed by some GPs about CFS/ME (Å sbring and Nä rvä nen, 2003;Raine et al, 2004) may be because they do not have a satisfactory model of the condition which convinces them of its reality as an illness and provides a potential rationale for management. Patients may be aware of the controversial nature of CFS/ME, and therefore particularly sensitive to being disbelieved, so may put their energies into convincing their doctors that their symptoms are real (Horton-Salway, 2001). If patients feel that their doctors do not really believe that they are ill, especially in the context of past lack of medical support or understanding, the patient-doctor relationship is likely to be undermined, and the patient may be left with a feeling of having nowhere to go (Chew-Graham et al, 2008).…”

‘What is it like to have ME?’: The discursive construction of ME in computer-mediated communication and face-to-face interaction

“…For example, it may be inferred that sufferers are simply malingering (Horton-Salway, 2001) or they may be stigmatized because it is more socially acceptable to suffer physical illness (Tucker, 2004). All of these assumptions have negative implications for the kind of person one is taken to be, and they therefore constitute a threat to identity.…”

“…The data have been derived from face-to-face interaction in interviews (Bülow, 2004;Bülow and Hydén, 2003;Horton-Salway, 2001;Tucker, 2004) health: 11(1) and recordings of meetings among members of a support group (HortonSalway, 2004) or patient school (Bülow, 2004;Bülow and Hydén, 2003). However, none of the previous studies in this area have attended to the way in which the internet provides a domain for interactions and support among sufferers.…”

“…Other work has examined how participants employ conversational strategies such as the use of medical terms and corroborative evidence (Horton-Salway, 2001;Tucker, 2004) to establish the factual status of their claims that ME/CFS is a physical and therefore legitimate illness. In addition, Bülow and Hydén (Bülow, 2004;Bülow and Hydén, 2003) show how sufferers deal with the problem of legitimacy by co-constructing consensual views (for example, in support groups) against which personal experience is compared.…”

“…However, sufferers may also produce attributions for the onset of the illness (for example, catching 'fl u), which simultaneously attend to their accountability for having it (Tucker, 2004;see also Horton-Salway, 2001). They also address negative identities directly, for example by constructing themselves as previously very active, thereby defl ecting the possible inference that they are lazy or depressed (Horton-Salway, 2001). Finally, Banks and Prior show how physicians may be sensitive to these problems and deal with them by 'by-pass[ing] psychological language ' (2001: 20) and using instead the vocabulary of brain chemicals (such as serotonin) which in turn opens the possibility of prescribing anti-depressants without talk of depression.…”