Een wandelende anomalie: Renate Dorresteins Heden ik (1993), ME/CVS, en de onbepaaldheid van de autopathografie

Abstract

Literary memoirs of illness are often invoked as valuable sources of medical and psychological insight. The epistemological value of such ‘autopathographies’, however, remains a matter of dispute in extant research: do these text adequately convey patients’ experiences, or are they literary, artificial constructs, whose value and meaning remain indeterminate? In this contribution, we focus on one such memoir, Heden ik (My Lot Today, 1993) by Renate Dorrestein, describing her struggle with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). As ME/CFS is generally considered to be an enigmatic illness, an analysis of Heden ik offers the opportunity to map the presupposed values as well as the limitations of autopathography. First, we map the academic debate on the epistemological value of illness narratives. Second, we chart the contours of the discussion on ME/CFS in the early 1990s, whilst demonstrating how the reception of Heden ik highlights the book’s perceived values and limitations. Finally, we offer a ‘double reading’ of Heden ik: a medical reading and an autopathographical reading (acknowledging its literary qualities). In our conclusion, we suggest that the inherent indeterminacy of autopathographical writing might be, in fact, an important quality contributing to a deeper understanding of a chronic, medically unexplained illness such as ME/CFS. Reading autopathographies as literary narratives, we argue, can reveal the rhetorical and cultural dimensions as well as the ambiguities and uncertainties of illness experiences.