Communities of Breath and Breathlessness
摘要
Breathlessness is a pervasive yet underacknowledged experience that shapes the daily lives of millions living with chronic respiratory disease. This chapter explores how older adults affected by breathlessness navigate the limitations of clinical care by forming and sustaining peer-support groups—specifically the UK-based Breathe Easy groups. Drawing on ethnographic research and medical humanities, the chapter situates breathlessness as both a biological symptom and an existential condition, shaped by stigma, structural neglect, and neoliberal healthcare reforms. It argues that peer-support groups serve not merely as coping mechanisms but as biosocial collectives—spaces where experiential knowledge, communal care, and political agency intersect. These groups challenge dominant biomedical paradigms by foregrounding the social dimensions of illness and enabling collective forms of resilience and advocacy. Through shared narratives, mutual aid, and patient-led activism, individuals with chronic breathlessness reframe their condition from an isolating affliction into a basis for solidarity and systemic critique. The chapter concludes by calling for integrated care models that recognize breathlessness as a public health concern in its own right, particularly in low- and middle-income countries where the burden is highest yet least acknowledged. By amplifying the voices of those living with breathlessness, this work contributes to broader conversations in public health, disability studies, and global health equity—arguing for a future in which breath is understood not merely as a physiological act, but as a social and political right.