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uni'wissen 02-2015_ENG

32 by Anita Rüffer The website provides valuable information for people with illnesses and their families Mr. M. was suffering from chronic pain. He had scrupulously followed the orders his doctor had given him, taking his blood pressure three times a day and writing down the results. And what did his doctor’s colleague do when he came in for his next checkup? “He glanced at the paper it briefly, crumpled it up, and threw it back to me.” The patient accompanies his account with a contemptuous laugh and a throw-away gesture, thus indicating that he found the doctor’s behavior insulting. It is not known whether this is how the scene really played out and whether the doctor intended to insult the patient – and that’s not the point anyway. What Mr. M. recalls in this form is his subjective per- ception of the situation, and for him it was a neg- ative experience. The way in which patients construct and present their stories can provide profound insight into what it’s like to live with a difficult illness. For Prof. Dr. Gabriale Lucius-Hoene from the Department of Rehabilitation Psychology and Psychotherapy at the University of Freiburg’s Institute of Psychology, authentic narratives like these provide “outstanding scientific source material.” And that’s not all: by sharing their experiences with illness, patients help others suffering from the same condition and their families to get used to their new life situation. “Journeys without a map” is how medical sociologist Arthur Frank from the University of Calgary, Canada, refers to the plight of patients suffering from a severe illness, which takes away all of the certainties they had taken for granted up to that point. People who have already been living with an illness for a Letting Patients Have Their Say 32