An authoethnography explores the lived experiences of patients being in control and self-managing their chronic illness among their families and friends. Findings show that the current health discourse narrows down people to mere patients and gives rise to tensions. This article indicates that people with one or several chronic illnesses or disabilities are first of all full citizens with needs, values, and drives seeking a meaningful life. Fair possibilities ought to exist to satisfy their needs to belong, to care for and to matter to others since these constitute an essential aspect of being human.

@en

Purpose: The purpose of this paper is to explore the impact of chronic illness on a couple’s life experiences over a period of 40 years. It critically examines the assumptions of the public health discourse in the light of this couple’s attempts to balance love and health care within their relationship. Design/methodology/approach: The couple, the first two authors, put themselves under the magnifying glass. They arranged for a dialogic encounter and built a co-constructed auto-ethnography. This study consists of a “raw” narrative and a reflection. This reflexive part was added by the third author, interpreting the couple’s experiences applying in a sociocultural way theories of ethical care. This sheds light on ethical care aspects encountered in the couple’s balancing of love and health care. Findings: This study shows that the couple copes with adversity rather than being in control of it. Nonetheless their love relationship appears to be flourishing, thanks to their acknowledgement of the importance of mutual caring. Research limitations/implications: The current public health discourse puts the couple’s private love relationship under pressure. It turns a blind eye towards the difficulties they experience with the contemporary “self-management” paradigm. The couple feels that the government is an interloper intruding into their private relationship. This creates tension, friction, anxiety, as well as increasing the burden of the illness and makes them feel insecure and unsafe. Originality/value: The novel method used in this study offers a rare and deep insight.@en