An inquiry into the meaning of Guillain-Barré syndrome : a thesis submitted in partial fulfillment of the requirements for the degree of Master of Arts

Abstract

Guillain-Barré Syndrome (GBS) is an autoimmune syndrome characterized by a severe and rapid onset of paralysis that ascends without warning. It has an unknown aetiology and is generally unknown by most people, including medical professionals. When a person who has had GBS is asked to speak about their experience, they are likely to talk about aspects of it that are personally meaningful. Their account can be likened to a story in that it collates seemingly unconnected facts, episodes of activity and emotional attributions into a sequence that provides knowledge and understanding. A story is a powerful form for expressing suffering and experiences and so is particularly suitable for the study of trauma and illness. The actual process of creating the story, plus its presentational and organisational forms, provides sources for uncovering the identities authors choose to create and present of themselves. Six people who have had GBS were interviewed about their experience, and their stories were analysed using a narrative inquiry to discern the meanings attributed to GBS from the participants’ own understandings and perspectives. The intended focus of the research was holistic and content based. The result of the narrative inquiry was a plot common to all six narratives. Namely, GBS is an inexplicable condition, during which horrendous things happen, but people do recover with time and it is likely their life view will be changed in the process. Four fundamental issues, identity, meaning, making sense and meaningfulness were drawn from the stories and configured into a narrative of the researcher’s making. What the participants chose to speak about became the meanings, or themes, major and minor, of their stories. No event has meaning in itself, however traumatic events can precipitate crises of meaning. When these crises are viewed within the context of other events, and are perceived to add value to life, then they have meaningfulness. In the telling of meanings and meaningfulness, the purpose for storying and the audience to whom the story is directed are the criteria for which the storylines are chosen. Both the story and the storying provide opportunities for the authors to create and offer images of themselves, that are then open to interpretation by an audience. As a traumatic experience, GBS enabled six people to tell their stories. In doing so they were able to make sense of important issues for themselves, and re-examine the way they saw themselves and the world.