Narratives of Illness and the Function of Diagnoses

Abstract

Narratives of Illness and the Function of Diagnoses Gaston Franssen (bio) The distinction that De Haan and Korsten foreground in their valuable commentary between, on the one hand, medical files (with their explanatory and archival function in the medical system), and, on the other, illness records (with their expressive or experiential function in the domain of self-care) is very helpful, as it underlines that illness narratives are not bound to a specific truth regime. They operate in, and at times even across, a variety of truth regimes, within which their status and function can radically differ. In that light, De Haan and Korsten have a point when they state that “any patient’s experience” “exceed[s] the domain of the medical proper”. Quoting from my contribution, they go on to question—with a decisiveness of tone that is somewhat reminiscent of the medical professionals portrayed in many memoirs of chronic fatigue syndrome (CFS)—instances where “any medical diagnosis is asked to do something, here, that takes it outside of the limits of the medical world, as when it is taken up in the ‘quest for a deeper understanding of the meaning of illness.’” However, and this is where I would like to push back to De Haan and Korsten’s arguments, the fact is that this is exactly what patients often do: they incorporate their medical diagnosis in their quest for self-understanding. The authors of the three memoirs I analyzed all express relief, to some extent, at being diagnosed with CFS, because they find that this diagnosis finally does justice to their experiences. For them, the whole point is that a medical diagnosis cannot remain within the limits of the medical world—because they actually have to live with it. Conversely, their emphatic rejection of any psychosomatic interpretation of their condition demonstrates that, to them, this diagnostic suggestion, too, is much more than a matter of medical epistemology: it functions as a verdict on what they experience and how they should make sense of their experiences, not simply on what causes their suffering. This function of medical diagnoses beyond the medical domain has been widely researched (for CFS; see Clarke & James, 2003; Huibers & Wessely, 2006; Woodward, Broom, & Legge, 1995). No doubt, this might not be the medically “proper” use of a diagnosis, but that observation is of little help to the patients themselves. In fact, it is telling that we can learn from the three memoirs that the authors, at least to their memory, did not receive any professional support on what the diagnosis might mean (or not mean) for them; it is hardly surprising, then, that their diagnosis might have come to function in unexpected and perhaps medically “improper” ways. The diagnosis of CFS, as Huibers and Wessely’s (2006, p. 895) findings imply, is precisely what links the medical file with the personal record; as such, it should be “the beginning, and not the end, of the therapeutic encounter.” [End Page 423] Gaston Franssen Gaston Franssen is assistant professor of literary culture at the University of Amsterdam, the Netherlands. His research interests include life-writing, celebrity, and ideologies of health. He co-edited the volume Celebrity Authorship and Afterlives in English and American Literature (Palgrave Macmillan, 2016) and has published in Celebrity Studies, the European Journal of Cultural Studies, and Philosophy, Psychiatry, & Psychology. References Clarke, J. N., & James, S. (2003). The radicalized self: the impact on the self of the contested nature of the diagnosis of chronic fatigue syndrome. Social Science & Medicine, 57 (8), 1387–1395. Google Scholar Huibers, M. J., & Wessely, S. (2006). The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine, 36 (7), 895–900. Google Scholar Woodward, R. V., Broom, D. H., & Legge, D. G. (1995). Diagnosis in chronic illness: disabling or enabling—the case of chronic fatigue syndrome. Journal of the Royal Society of Medicine, 88 (6), 325. Google Scholar Copyright © 2020 Johns Hopkins University Press