Sciences, Philosophie, Histoire – UMR 7219, laboratoire SPHERE

What is the meaning and the scope of the aspiration to live an "ordinary" life, a "normal" life, a life "as before" or "like everyone else", as it is sometimes expressed by people living with a chronic condition?
Should these different expressions be understood as different facets of the same desire for "normality" or, on the contrary, should we try to differentiate them? Are they desperate expressions of a long-lasting waiting for a cure that will not come, or an attempt to recreate another form of life that is fully accepted by the person herself and her social world? What is the relationship between the notion of "normalcy" and that of the ordinary, between the routine, the everydaylife, and the idea of a dignified or decent life? Is a "normal" life a life like any other or a form of life that takes into account the specificities of its organic state?
The EPIPHINORE project, funded by the ANR, follows the NORMAVI research project ("Having a ’normal’ life in the experience of chronic illness, disability and aging: personal challenge, social and clinical issue", IRESP funding 2018-2019). It focuses on the aspiration to lead an "ordinary", "normal" life, "as before", as it may be expressed by people with chronic condition, who live a more or less medicalized life and maintain different relationships with the healthcare system. Its ambition is to question the meaning and the scope of such an aspiration both from an empirical and philosophical point of view. At the conceptual level, the project explores in particular the resources of the philosophies of the normal and the pathological developed by Kurt Goldstein and Georges Canguilhem who highlight the specific life dynamics of each individual and allow to elaborate the idea of a “reinvented normality”. This reflection on life dynamics gives an essential place to time, which is invaluable when dealing with chronicity: the disease lasts, but also evolves, as does its management; the relationship to the disease can also change over time. The project focuses also on individuals’ living environment in the spatial, social and temporal sense of the term. This specific attention to the philosophies of the normal and the pathological extends into a reflection on the ordinary (philosophy of the ordinary) as well as on the "forms of life" in a chronic pathological state (philosophy of the forms of life) with a special focus on the “milieu” in which the chronic condition is experienced.
On the empirical level, the project mobilizes the methods of field philosophy, in particular observations in hospital services as well as in-depth interviews with people suffering from chronic diseases.
The project brings together two joint research units: University of Paris and CNRS (Marie Gaille, , scientific coordinator and project leader, and Agathe Camus, , post-doctoral fellow, for SPHERE) and University of Paris and INSERM (Viet-Thi Tran and Philippe Ravaud for CRESS) specialized in philosophy of medicine on the one hand, and in epidemiology on the other hand. It is thus based on a multidisciplinary methodology that articulates a conceptual and normative philosophical approach, the methods of field philosophy, and an epidemiological approach of patients’ perspectives. The latter is based on the ComPare cohort , post-doctoral fellow, for SPHERE) and University of Paris and INSERM (Viet-Thi Tran and Philippe Ravaud for CRESS) specialized in philosophy of medicine on the one hand, and in epidemiology on the other hand. It is thus based on a multidisciplinary methodology that articulates a conceptual and normative philosophical approach, the methods of field philosophy, and an epidemiological approach of patients’ 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 first results of the surveys carried out from this cohort on the perspective and experience of chronically ill people highlight a double "burden". This “burden” is linked on the one hand to the disease and its consequences on daily life, and on the other hand to the treatment itself and to the care paths. These results suggest the design of a "minimally disruptive medicine", all the more useful as it could reduce the gap between the life before the disease and the current life and allow to live an "ordinary" life path, even if it is different from the life before. 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 judging and evaluating medical care and treatment in the context of chronic diseases.
By questioning the meaning and scope of such an aspiration in the different forms it may take, and the place that can be given to it in medical practices and the design of care pathways, the project intends to answer the question "What kind of medicine do we want?" for multimorbid chronic patients, by developing an innovative collaboration between philosophy and epidemiology.