Immigrants to Health: Negotiating Liminality and Belonging with Cystic Fibrosis in Germany

Cystic fibrosis is a rare genetic disease that significantly reduces life expectancy. Therapy can delay the progression of the disease, but it is onerous, time-consuming and makes the disease more visible, creating a sense of not belonging to the healthy peer group that young people desperately want. Recent, very expensive advances in therapeutic interventions have dramatically reduced both the therapeutic load and the visibility of the condition. Drawing on a long-term ethnographic study in Germany, I explore how this changes the ways people with cystic fibrosis negotiate belonging, which is experienced as a metaphorical immigration into the world of the healthy.