Stefan Reinsch (Physician and medical anthropologist from the University Children’s Hospital Neuruppin & Centre of Health Service Research, Brandenburg Medical School – Theodor Fontane, Germany.)
Anthropologists have directed our attention to the struggles of marginalized individuals and vulnerable groups like those with a rare illness to gain greater public visibility of their therapeutic burden. Yet, only modest attention has been paid to the efforts put into achieving a visible normality through therapeutic practices or to the therapeutic work behind this apparent normality.
This paper builds on a long-term anthropological study in collaboration with a group of young adults who have cystic fibrosis (CF), a rare genetic and life-shortening condition. Therapy can postpone disease progression, but it is burdensome, time-consuming, and can make illness visible. Over the last 15 years I explored how young people – who often do not readily appear to be sick – integrate therapy into their daily lives.
Using a practice-theoretical approach inspired by Michel de Certeau, I examine the tactics they employ in carving out a habitable space in an ableist world. As both anthropologist and physician, I am interested in their creative struggle for well-being, care and with morality. I suggest that living with CF can be understood (and is described by some people with CF) like being an immigrant to the world of the healthy. It means managing a precarious normality since while the visibility of illness is a resource that can be used to gain support and care, it also excludes them from the group of the healthy ones.