Learning to live well with chronic fatigue: the personal perspective

Background. Persistent fatigue is recognized as an integral and significantly disabling aspect of the experience of living with a long-term health condition. Acute medical care models have limited applicability when seeking to provide health care to meet the needs of those living with chronic fatigue. Aims. This article is a report of a study that sought to understand how people can live well in spite of the presence of chronic fatigue. Methods. A thematic analysis was conducted on 43 narratives provided by people living with chronic fatigue during 2007 as part of an internet-based study. Findings. This report focuses on the two themes that appeared of most relevance to participants: managing energy and redefining self. Two particular approaches to energy management were noted. In the first, the focus is upon moderating and avoiding excess to manage energy. In the second approach, the body was conceptualized as a machine so that energy becomes a limited resource to be managed. Work to redefine the sense of self appeared to be focused upon the desire to seek normality, to see oneself as rational and come to terms with change. Conclusion. People can and do find ways to live well with chronic fatigue. Understanding how the person with chronic fatigue has come to conceptualize his/her experiences will be a more fruitful starting point than providing recipes for successful living if nurses are to work effectively with this group of people.