Wednesday, October 30, 2019, 15:30-17:00
Grote Gracht 80-82, Attic (3rd floor)
Faculty of Arts & Social Sciences
Contested illness “narratives”
Department of Culture Studies at Tilburg University
Health problems such as chronic fatigue syndrome, chronic Lyme disease or fibromyalgia are often considered as “contested illnesses”. Contestation habitually entails both an ontological and a moral dimension: these illnesses are contested for not being real, and sufferers are often denied the sick role. A health problem may become contested when an illness (the subjective experience of a certain health problem) is not accompanied by some disease (a pathological lesion which explains the symptoms). This is especially the case when health problems are experienced as physical. For indeed, for the majority of mental health and psychiatric problems – nearly all the entries in the DSM – there is no clear underlying pathological lesion, but still the reality of health problems such as anxiety or depression is not contested. Health problems such as anxiety and depression are recognized as illnesses, and sufferers as individuals who are allowed to assume the sick role. In my talk, I will therefore focus on physical problems that are contested, the so-called medically unexplained physical symptoms (MUPS). First, I will explain that these health problems are contested especially so because they challenge both body-mind dualism and the common view that physical problems should have a physical cause (the so-called “disease-model”). Next, while drawing on some ideas by Susan Sontag and Arthur Frank, I will discuss what the role of explanations are in the process of making sense of one’s illness. Contested illnesses are not only complex health problems because of their unclear etiology. Most of these illnesses imply a chronic condition and, as such, they challenge the very possibility of an illness narrative. After all, a narrative requires a plot, and that is something that seems to be lacking in contested illnesses. In the final part of my paper, based on an online ethnography, I will give some examples of how sufferers of contested illnesses try to make sense of their illness and try to seek recognition for their problem through social media use (vlogging and Instagram).
Jenny Slatman is Professor Medical Humanities in the department of Culture Studies at Tilburg University. She has published widely on issues of embodiment in art, expression and contemporary medical practices. Her publications include a book-length philosophical study on the meaning of expression in the work of the French philosopher Merleau-Ponty: L’expression au-delà de la représentation. Sur l’aisthêsis et l’esthétique chez Merleau-Ponty (Paris, 2003), and the monograph Our Strange Body: Philosophical Reflections on Identity and Medical Interventions (Amsterdam-Chicago, 2014). In 2010, Slatman was awarded a NWO-Vidi grant for her research project on Bodily Integrity in Blemished Bodies. In 2017 Slatman was awarded a NWO-Vici grant for her research project Mind the Body: Rethinking embodiment in healthcare. This project will focus on the meaning of embodiment in health practices pertaining to MUPS (medically unexplained physical symptoms), obesity, and depression, while exploring how health professionals, patients and the wide audience talk about and deal with body-mind issues www.jennyslatman.nl; www.mindthebody.eu