Penser l'expérience de la maladie chronique pour une lecture complexe du corps

Thinking the Experience of Chronic Illness towards a Complex Reading of the Body

Type 1 diabetes, a chronic autoimmune disease characterized by absolute insulin deficiency, manifests itself on a day-to-day basis through significant variations in blood sugar levels, triggering sometimes unexplained and unexpected bouts of hypo- and hyperglycemia. In this sense, it constitutes a meta-disease (Hintermeyer 2011) that produces a series of uncertainties by making the body particularly unstable. The very experience of these crises places the individual in an intermediate status between illness and health (Canguilhem 1966), between rupture and continuity, between routine and emergency management (Strauss 1992). How, then, are we to read this erratic body? The question is even more interesting given that this type of diabetes manifests itself mainly during childhood. Between organic deficiency and an “unfinished” body (Shilling 1993), this article examines the reading work carried out by these children, the way they learn to detect a crisis and recategorize bodily signs as symptoms of the disease: between medical standards, sensory experience and contextualization of the body. This detailed analysis, taking into account the interplay of multiple interacting elements within a bio-psycho-social body-system, invites us to move away from the strictly biomedical readings that can be made of it - which often relate to the quantification of its attributes (in this case, blood sugar levels) - to propose a complex reading of the body. By questioning the individual's relationship to these norms and to his environment, the article is part of a wider reflection on the variability of living organisms and their homeodynamic capacities (Petitjean & al. 2024), on the self-eco-organization (Morin 1990) of a body in interaction with its environment, in constant search of equilibrium and stability, beyond physiological disorder.