Abstract

Currently, patients are expected to take control over their health and their life and act as independent users and consumers. Simultaneously, health care policy demands patients are expected to self manage their disease. This article critically questions whether this is a realistic expectation. The paper presents the auto-ethnographic narrative of the first author, which spans a period of 27 years, from 1985 to 2012. In total nine episodes were extracted from various notes, conversations and discussions in an iterative process. Each of these episodes was condensed around a ‘critical moment’ as perceived by the “self”. The critical moments in the illness process vary between newly encountered problems with basic needs and mourning, to renewed strength and the desire to grow, embracing new situations. Being confronted with and living with a chronic illness involves periods of anxiety and self centredness alternating with strength and advocating the interests of peer-patients. These episodes of emotion, confusion and refinding a balance have a cyclic pattern. The narrative illustrates the vulnerability and dependency of a patient with a chronic disease. The discussion relates this to mainstream dominant views on patients ‘in control of their own life’. The narrative illustrates, that the vulnerability and dependency of the patient are key factors to take into account in health care policy. The narrative provides a counter story, challenging current thinking in terms of strength, selfmanagement, patients’ own control and independent role