Paper short abstract:

This paper describes how self-management of COPD symptoms is simultaneously a medically encouraged, conscious strategy and a subjective rhythm of negotiating relationships and environmental conditions in everyday life; realities which often do not align in the experiences of those with COPD.

Paper long abstract:

Chronic obstructive pulmonary disease (COPD) is a serious long-term lung disease estimated to affect over three million people in the United Kingdom. Many of those living with COPD are 'expert patients' learning to cope with and manage their conditions. This paper describes how for those living with COPD, self-management of symptoms is simultaneously a medically encouraged, conscious strategy and an embodied rhythm of negotiating relationships and conditions in everyday life. Like the regulation of breath, this social rhythm is a crucial means to decipher how subjective experiences of interaction, movement and changes to certain abilities do not always align to conventional ways of comprehending patient autonomy and agency. Exploring the experiences of those attending lung condition support groups in North East England, this paper follows the subtle and intricate ways those with COPD negotiate and incorporate various health-related knowledges. This includes pacing, the formation/modification of habits and careful management of selves and identities when facing instances of stigma, and the apparent 'shrinking' of ones sense of being-in-the-world. This paper considers how notions of somatic awareness and 'biographical disruption' (as affecting behaviours, explanatory frameworks and initiating the mobilisation of resources) can further reveal what it is like to live and manage chronic illness. In doing so it aims to bring further visibility to the reality of an arguably invisible disease.