IPF Patients’ Lived Experiences of Physical Activity: Examining the Materiality of a Terminal Illness

Idiopathic Pulmonary Fibrosis (IPF) is a progressive, fatal, fibrotic lung disease that’s biomedically characterised by a poor mortality with most patients dying from respiratory failure 3-5 years post-diagnosis (Raimundo et al., 2016). IPF’s burdensome material realities, including chronic cough, shortness of breath, fatigue, decreased physical activity, or unusually rapid and shallow breathing, are in turn recognised as holding significant (and generally negative) corporeal (and therefore also social/emotional/psychological) implications for individuals living with IPF. Taking inspiration from Havi Carel’s (2013, 30) call for the need “to rethink the body’s ability to engage with the world, its ability to provide movement, and creativity as it did before [illness onset],” this paper looks to phenomenologically explore the possibilities of health within the illness. Based on multiple interviews carried out over the course of IPF patients’ dis(ease) progression, this paper engages the (changing) meaning and significance of physical activity in the lives of our IPF collaborators as they come to terms with both their complex material reality and resultant changed embodied identity.