Chapter 3: The Dimension of Temporality in Rare Disease Stories: Towards a Possible Future?

Any disease—ordinary or rare—is a destabilizing experience because it requires to the individual to live with symptoms and difficulties throughout the entire life. So far, 8000 varieties of rare diseases have been diagnosed. Despite their differences, they have in common the fact that strongly the construction of the life projects and the development of the personal and social identity. According with cultural psychology, narration provides a time frame to give meaning to the experience of the disease.

Forty-four narrative interviews were conducted with parents of children with rare disease and thirty narrative interviews were conducted with adults with rare disease. The main aim of the research is to investigate, through a discourse analysis, the parents’ peripeteia (breaking) between what was their life before the birth of their own child and their present time consisting of medical treatments, hospitalization and anticipation of mourning, with the vision of a limited future. The stories of adults represent the narrative in the present time of what they fear or wish for the future of their children: from their most anguishing nightmares to their dreams for a possible life. At the same time, adults’ stories show the complexity of a life path that, despite the uncertainty of their disease, has developed over time. Parents’ stories and adults’ stories with rare disease are analysed according to a time perspective that takes into account the relationship between past, present and future.