Paper Short Abstract:

Time scarcity and acceleration are omnipresent. But, what happens when people with a life-shortening illness surpass their predicted lifespan? We explore the shift in temporal orientations and care practices within expanding illness trajectories through an ethnography of people with cystic fibrosis.

Paper Abstract:

Time scarcity is a condition that many consider to be unavoidable due to the acceleration of life. Sociologist Hartmut Rosa argues that the temporal structures of modernity are characterized by a threefold acceleration: technological acceleration, acceleration of social change, and an acceleration of the rhythm of life. As a result, people believe they are saving time when in fact they are just busier. This acceleration is accompanied by the fear of falling behind in life and the need to be more active. However, if improved healthcare leads to a shift in people's time horizon towards the future, what does this mean for people's well-being and how they deal with the time they have left?

To answer this question, we use the experience of people with cystic fibrosis (pwCF), a rare, genetic and life-shortening condition. Due to new and intensified therapeutic regimen, some of which require up to two hours and seven different medications per day, the average life expectancy of pwCF has doubled in recent decades. Today, young pwCF who were once told they would not live into adulthood are able to pursue education, employment, and start families. Drawing on long-term ethnographic research, we explore the everyday concepts and uses of time and temporality. How are the demands of daily life reconciled with therapy, social expectations, and health care structures? And how does a long-term future, first conceivable in adulthood, non-linearly alter temporal orientations to the present and past, and how people situate themselves within their illness trajectories?