From embodied risk to embodying hope: Therapeutic experimentation and experiential information sharing in a contested intervention for Multiple Sclerosis

Abstract

People who pursue unproven therapies are often portrayed as 'desperate' individuals duped by medical racketeers peddling 'false hope'. These patients, in contrast, present themselves as empowered citizens who have taken an informed decision to pursue an experimental therapy. This paper explores the latter perspective through the case of the so-called 'liberation procedure': a controversial endovascular intervention proposed as a treatment for Multiple Sclerosis (MS). Drawing on interviews with 48 people affected by MS, we analyse the decision-making processes and justifications thereof of those who had the procedure (n = 31). While the decision to have the intervention might not have been justified according to the standards of evidence-based medicine, it was nonetheless premised on a shared 'experiential logic' - conceptualised as a logic of embodied risk/hope - that extends beyond the specific condition and therapy in question. The paper explicates this logic, concentrating on patients' negotiations of (a) risk and uncertainty; (b) expertise and evidence; and (c) hope and experiment. In particular, we foreground how, through a combination of therapeutic experimentation and experiential information sharing, patients turn their own bodies into (contested) sources of hope for themselves and others, which, in turn, shapes their embodied experiences of living with MS in the present.