Honoring the Patient Side. Narrative Medicine, Autoethnography and a Technoscientific Story. Dalla parte del paziente. Medicina narrativa, autoetnografia e una storia tecnoscientifica.

This contribution aims to situate Narrative Based Medicine (NBM) in the context of an autoethnographic account of illness in which I as a patient, STS scholar and researcher have continously interpreted and close-read the various artefacts incoming in the clinical history of the disease. Such a process has significantly changed the trajectory of my illness (eventually diagnosed as DHL, Double Hit Lymphoma, a pathology discovered in 2008 and re-classified by WHO in 2016 due to its aggressivity and poor prognosis). From a theoretical viewpoint, my main focus is to inquire the relationships between my autoethnographic account (Pellegrino, 2021, 2022) and the mainstream frame of Narrative Medicine as pioneered by Kleinman (1980, 1988) and Byron Good (1994, then consolidated by Rita Charon (2001, 2007). More than a set of techniques and methods, my interest in NBM resides in the artful integration (see Suchman, 2002) of heterogenous frames (first of all, literature and medicine) to understand the doctor-patient relationship in the clinical context and beyond. Furtermore, I am particularly interested in the comparison/further integration of NBM with an evocative autoehnography perspective (Bochner and Ellis, 2016), which puts value into the researcher’s vulnerability as a tool for interpreting and understanding a specific context and culture. Following Frank (1995) I am devoted to analyse the close linkages among imaginary, narrative and biography when an illness comes to wound the storyteller/researcher, and in my personal case, when an STS researcher meets on the skin the weight of classifications (Bowker and Star, 1999), laboratory techniques and (missing) alliances and enrolments (Latour, 1987, 2005) in the Actor-Network Theory of (my) disease/illness (see Conrad and Barker, 2010) with its complexity (clinical history, biopses, stadiation process, therapeutic strategies, patient’s bio, contingencies of any kind, technoscientific machines and machinations, markers, and above all, misdiagnosis, omissions and negations). The last passage I try to accomplish is from stories of healing as a genre of witness and memoir, to the healing power of stories (and my own story) as a way to re-conquer life joy and a tool for doctors and health professionals (especially on training) with reference to consequences of medical errors and missed listening of – as I defined myself - a not naive patient (Pellegrino, 2001).