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A Walking Anomaly: Renate Dorrestein’s Heden ik (1993), ME/CFS, and the indeterminacy of autopathography

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.
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Keywords: autopathography; chronic fatigue syndrome; illness narrative; indeterminacy; literary memoir; myalgic encephalomyelitis

Document Type: Research Article

Affiliations: 1: Email: [email protected] 2: Email: [email protected]

Publication date: March 11, 2018

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  • Het tijdschrift Nederlandse Letterkunde is een wetenschappelijk, peer-reviewed tijdschrift voor de Nederlandstalige letterkunde. Het tijdschrift is een podium voor vakbeoefening in al haar vormen en facetten. De diverse bijdragen beslaan in hun totaliteit het gehele spectrum van Nederlandstalige letterkunde van de Middeleeuwen tot heden. Een jaargang Nederlandse Letterkunde telt drie afleveringen waarvan er steeds één aan een actueel thema gewijd wordt.

    The Dutch-language journal Nederlandse Letterkunde (Dutch Literature) is an academic peer-reviewed journal for Dutch literature. The various contributions cover the entire spectrum of Dutch literature from the Middle Ages to the present. Nederlandse Letterkunde publishes three issues a year of which one is devoted to a contemporary topic.
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