Patient School as a Way of Creating Meaning in a Contested Illness: The Case of CFS

Abstract

Creating meaning in a situation of contested illness like Chronic Fatigue Syndrome (CFS) is an interactive process. As an example of how meaning is created, a CFS patient school organised by a hospital clinic in Sweden is discussed. This school can be seen as both a school and a medically oriented activity. The presence of different frameworks provides an opportunity to use different perspectives to understand CFS. It makes it possible for the participating men and women to regard the illness both from the outside as a social object; from the inside through personal experiences, and to put the diagnosis and suffering in a larger 'sickness' perspective. Consequently, a number of different interpretations are brought up and used to create meaning in a situation of illness. The patients/students are thus learning to discursively manage the illness at the same time as they examine different ways to interpret their experiences through this discursive activity.

Identity and coping experiences in Chronic Fatigue Syndrome: A synthesis of qualitative studies

“…Virkningene kan forklares som følge av endring av nivået av belastning som følge av styrking og mestring 55 . Økt kunnskap og refleksivitet blant både helsepersonell og pasienter kan bidra til innsikt og endring 204 , og det er vist at mestringskurs for pasienter med kronisk sykdom generelt og pasienter med CFS spesielt kan ha positiv effekt 11;205 . Det er flere prosjekter i gang i Norge for å evaluere mestringskurs 206;207 og dette vil bidra til bedre kunnskap om hvordan mestringskurs best kan legges opp og kanskje skape grobunn for å lage større forskningsprosjekter, for eksempel en RCT som vurderer effekten av mestringskurs i forhold til utmattelse, livskvalitet, fysisk funksjon og sosial deltagelse.…”

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

“…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.…”

“…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. In this way, the group experience is used to validate individuals' experiences.…”

“…In relation to the fi rst issue, Bülow and Hydén (2003) identifi ed at least three 'interpretative frameworks' that were used often simultaneously by patients, nurses and physicians in the patient school they studied. These included biomedical, biopsychosocial and non-medical or everyday explanations of the illness.…”

A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome) sufferers’ experiences of interactions with doctors

“…In addition, Bülow and Hydén (Bülow, 2004;Bülow & Hydén, 2003) show how sufferers deal with the problem of legitimacy by co-constructing consensual views (e.g. in support groups), against which personal experience is compared.…”