“I’ve Never Not Had it So I Don’t Really Know What it’s Like Not to”: Nondifference and Biographical Disruption Among Children and Young People With Cystic Fibrosis

Abstract

The relevance of biographical disruption and loss of self for children and young people is unclear, particularly in cases of congenital illness such as cystic fibrosis, where no prior period of wellness, stability, or perceived normality might exist. We explored the meaning, importance, and forms of maintenance of ideas of normality among 32 children and young people with cystic fibrosis. We examine the ways in which normalcy is produced, maintained, and threatened, and discuss the implications for the applicability and relevance of these traditional sociological concepts. Analysis of children's and young people's accounts resulted in a conceptualization of four forms of normalcy based on personal and social definitions and audiences. Biographical disruption appeared relevant but in a more nuanced form than its usual conceptualization when applied to adult populations. Maintaining normality within the family resulted in continual biographical revision in anticipation of future illness trajectory and life course.

Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis

“…The findings from this study corroborate those from Williams et al (2009) who suggest that CF is an embedded part of identity. Unlike the work of Bury (1982) and Thorne and Robinson (1989), being born with CF appears to have less impact on biography than those who develop chronic illness later in life; rather it appears to have become an integral embedded part of their being.…”

Social Network Dynamics and Biographical Disruption: The Case of “First-Timers” with Mental Illness

“…Classic sociological work (Davis 1963;Strauss 1975) focused on the interactional repercussions of illness. This theoretical agenda continues in recent work on mental illness (Cardano 2010), cancer (Hubbard, Kidd, and Kearney 2010;Reeve et al 2010), hepatitis C (Harris 2009), and cystic fibrosis (Williams et al 2009), following in that narrative tradition (see Green, Todd, and Pevalin [2007] as an exception). In this article, we return to Bury's theoretical concerns, taking up his charge to move "from descriptive categories of interaction" to examine the impact of key transitions and turning points in illness careers.…”

Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study

“…The concept of “continual biographical revision” has been used to describe how young people with cystic fibrosis attempt to normalise their lives,40 although the genetic cause of this disease and its impact during childhood distinguishes it from COPD. Morbid obesity, which is caused by lifestyle, may be a parallel health problem that is not an illness.…”