Paper short abstract:

Chronic breathlessness is associated with poor interoceptive awareness and difficulty interpreting symptoms. Increased breathlessness is perceived as a barrier to movement and this paper describes a potential rationale and approach to addressing this.

Paper long abstract:

When bodies move breathing becomes apparent to the breather and to the observer. For some, this is a matter for joy and exhilaration but for others, especially those suffering from chronic lung disease, movement becomes something to be avoided as increasing breathlessness is frightening and potentially dangerous. A paradox remains, however, that, exercise is an important management approach helping to sustain lung function even in illness. Chronic breathlessness is difficult to treat and the main approach is to offer patients pulmonary rehabilitation (PR), which consists of an exercise programme run by specialist physiotherapists in a gym-like space. Uptake of this therapy is poor and so far the main explanation is that people with breathlessness do not like being made to feel breathless through exercise. Interdisciplinary research in the Life of Breath project has added nuances to this explanation. Working with neuroscientists has revealed that people with chronic breathlessness have poor interoceptive awareness, which in turn leads to problems of symptom interpretation, discordance between measured and experienced breathlessness, and a sense of lack of control. People are also put off by the language of PR, and by the unfamiliarity of the gym-like space. Using an interdisciplinary medical humanities approach, this paper will explore the links between interoceptive awareness and symptom discordance in chronic breathlessness. I will describe and justify an approach involving dance that has the potential to address barriers to movement and suggest that it is possible to effect change in a sense of embodied awareness.