What is the meaning and scope of the aspiration to live an "ordinary", "normal", "same as before" or "same as everyone else" life, as sometimes expressed by people living with a chronic pathological condition?

Should these different expressions be understood as different facets of the same desire for "normality", or, on the contrary, should they be differentiated? Are they desperate expressions of waiting for a cure that will never come, or an attempt to recreate another form of life that we fully accept, rather than resign ourselves to? What links can we establish between the "normal" and the ordinary, the routine, the everyday, the idea of a dignified or decent life? Is a "normal" life a life like any other, or is it a form of life that takes account of the specificities imposed by one's organic condition, that is different, and fully assumed as such? What is the meaning and scope of the aspiration to live an "ordinary", "normal", "as before" or "like everyone else" life, as sometimes expressed by people living with a chronic pathological condition?

The EPIPHINORE project, a continuation of the NORMAVI research project ("Avoir une vie " normale " dans l'expérience de la maladie chronique, du handicap et du vieillissement : épreuve personnelle, enjeu social et clinique", IRESP funding 2018-2019), looks at the aspiration to lead an "ordinary", "normal", "as before" life, as it may be expressed by people with chronic illness(es), who live a more or less medicalized life and maintain different relationships with the healthcare system.

It brings together two teams from the University of Paris (Marie Gaille, scientific coordinator and project leader, and Agathe Camus, post-doctoral researcher, for SPHERE; Viet-Thi Tran and Philippe Ravaud for CRESS) and engages a multidisciplinary methodology that combines a conceptual and normative philosophical approach, field philosophy methods, and an epidemiological approach to patient perspectives. The latter is based on the ComPaRe cohort (https://compare.aphp.fr/), which brings together a community of people with chronic diseases. This combined approach is made possible by the convergence between the questioning developed in the NORMAVI project and the ambition and design of ComPaRe. The initial results of the surveys conducted with this cohort on the perspectives and experiences of people with chronic illnesses highlight a double "burden," related on the one hand to the disease and its impact on daily life, and on the other hand to the treatment itself and the healthcare pathways. These results suggest the need for a "minimally disruptive medicine," particularly useful as it could reduce the gap between life before the illness and current life, allowing for an "ordinary" life course, even if it differs from life before the illness. They also show that people with chronic diseases sometimes question the judgment criteria and scales used in medicine and suggest that maintaining an "ordinary life" could become a criterion for the judgment and evaluation of medical care and treatments in the context of chronic illnesses.

By questioning the meaning and scope of such an aspiration in the different forms it can take, and the place it can occupy in medical practices and the design of care paths, the project aims to contribute to answering the question "What kind of medicine do we want?" for multi-morbid chronic patients, by developing an innovative collaboration between philosophy and epidemiology.