Sharing Experiences of Contested Illness by Storytelling

Abstract

Based on audiotaped conversations from a patient school for adults suffering from chronic fatigue syndrome, this article examines sharing experiences of illness as a mutual activity. The analysis shows that sharing experiences in this context is primarily of the narrative kind. Three main types of narratives were found: self-contained personal stories, orchestrated chained personal stories, and co-narrated collectivized stories. Through sharing three things seem to happen: (1) the participants jointly created experiential knowledge and a mutual image of the illness, (2) the individual sufferers could compare themselves to the jointly constructed image, (3) the active sharing of experience bestows a mutual confirmation of suffering irrespective of whether the individual’s experiences correspond or deviate from the common picture. Two parallel transitions seemed to occur: the transformation of personal experience into shared collectivized experiences and the transition when the individual sufferer perceives his/her private suffering through sharing experiences with co-sufferers.