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uni'wissen 02-2015_ENG

provide indications of what patients need in order to learn how to live with a severe illness. Imitating the Doctor’s Voice At any rate, the chronic pain patient Mr. M. certainly did not experience the doctor’s disdainful behavior as supportive. “Doctors should be trained to be conscious of the role they play for their patients in helping them to cope with their illness.” That is the conclusion Lucius-Hoene and a team of colleagues reached in a study on scenes in which patients imitate the voices of their doctors. The team meticulously analyzed 394 such scenes from interviews with 26 type 2 diabetes patients and 30 chronic pain patients – in the knowledge that the way the narrators rep- resent their doctors corresponds to their own emotions and strategic goals at the moment of narration. “Have you always been so fat?” says a diabetes patient, impersonating her doctor. Like many fellow sufferers, she has to deal with doctors who admonish her in humiliating fashion to change her lifestyle – which, as diabetics know, is actually not a bad idea. But what they want is to feel respected and treated as a person. A pain patient quotes his doctor as having said “Why don’t you go to a psychiatrist?” – thus demon- strating how much people like him have to struggle to gain acceptance for their suffering among those in their personal environment, including their doctors. They feel all too often like they are being labeled as lunatics who only need to put in enough effort and follow their doctor’s orders to get rid of their pain, at least that’s how they describe it in their narratives. Images for Describing Pain How should one speak about a disease in the first place? Should one simply not talk about it at all? Leon Murthy wrote a bachelor’s thesis under Lucius-Hoene in which he analyzed how people describe pain and what images they find for it. People with a more rational disposition, for instance, rate their pain in the morning, afternoon, and night on a scale from one to ten. Another Further Reading Ziebland, S. / Lavie-Ajayi, M. / Lucius-Hoene, G. (2015): The role of the internet for people with chronic pain: Examples from the DIPEx international project. In: British Journal of Pain 9/1, pp. 62–64. Lucius-Hoene, G. / Groth, S. / Becker, A.-K. / Dvorak, F. / Breuning, M. /  Himmel, W. (2013): Wie erleben Patienten die Veröffentlichung ihrer Krankheitserfahrungen im Internet? In: Die Rehabilitation 52/3, pp. 196–201. Lucius-Hoene, G. / Thiele, U. / Breuning, M. / Haug, S. (2012): Doctors’ voic- es in patients’ narratives: coping with emotions in storytelling. In: Chronic Illness 8/3, pp. 163–175. “From an epistemological perspective, that’s a paradigm shift.” Prof. Dr. Gabriele Lucius- Hoene is a licensed physician and a trained psychologist, neuropsycho- logist, and psychological psychotherapist. She earned her habilitation qualification in psychology at the University of Freiburg with a thesis on identity constitution and coping in the autobiographical narra- tives of soldiers with war injuries to the brain and their spouses. She served as a project head at the collaborative research center “Identities and Alterities” from 1997 to 2000. She has coordinated the project DIPEx (Data- base of Individual Patients’ Experiences) Germany since 2008. She was a fellow at the Freiburg Institute for Advanced Studies (FRIAS) in 2011/12. Photo: private uni wissen 02 2015 patient speaks of a “glowing iron ball” that “rolls down her spine.” Another module on the website is devoted to epilepsy, an illness that, like chronic pain, is regarded as socially problematic. In a dissertation also supervised by Lucius-Hoene, Martina Breuning established that pain and epilepsy patients both develop their own strate- gies for how, when, and to whom they reveal their illness. In any case, talking can help when patients find themselves confronted with the diagnosis of a life-threatening disease like colon cancer – described in one of the more recent modules. The patients use completely different linguistic strategies to grapple with the prospect that their death might be near. That is the conclusion drawn from an analysis of 43 interviews in the dissertation of Dr. Sandra Adami, a research assistant and former doctoral candidate of Lucius-Hoene. While some people tell stories of “other people’s death,” others already know what song they want to be played at their own funeral. 35 uni wissen 022015