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Paper short abstract:

Based on two anthropological research, the paper analyze how chronic conditions (type 1 diabetes, asthma, Turner syndrome) constitute different experiences of the body and the sources of crisis and uncertainty for youth, and how they stabilize and control it through multiple social resources.

Paper long abstract:

Through two anthropological research, "PASMAC - Passages d'âges et maladie chronique : les trajectoires de soins des 12-21 ans atteints de diabète de type 1 ou d'asthme" (IRESP, INSERM) and "Grandir avec une maladie chronique ou une anomalie chromosomique : vers une anthropologie de l'incertitude" (IUF), we will analyze how chronic conditions constitute sources of uncertainty for teenagers and youth. The results refer to two diseases (type 1 diabetes, asthma) and one syndrome (Turner syndrome) that are profoundly different in their manifestations and evolution over time. Nevertheless, it is interesting to compare them for the type of crisis and uncertainty they raise and for the responses they provoke. The uncertainty takes shape in three experiences of the body: that of an opaque body, that of an unstable body and finally that of a body that betrays. We will analyze the contours of this bodily uncertainty, how it can be amplified or limited, and the ways to stabilize and control it through multiple social resources. The concept of "right distance" seems central. Uncertainty obliges youth to formulate what is not necessarily said, to decentralize, and to open up a distance where the signs of trouble multiply and where the illness seems to take up all the space. Following Luc Boltanski's distinction (2009), coping with uncertainty implies practical moments and moments of reflexivity which youth appropriate and take hold of in a socially diversified way.