Floating with Ankylosing Spondylitis: An autoethnography on the impact of diagnosis and improvement through swimming practice

Abstract

This study presents an autoethnographic analysis of the experience of chronic pain in ankylosing spondylitis (AS), aiming to contribute knowledge on complementary strategies for disease management. Drawing on the author’s personal experience, it examines the physical, emotional, and social dimensions associated with delayed diagnosis, normalization of pain, and symptom invisibility. The methodological approach is grounded in theories of the lived body and embodied experience, exploring how chronic pain transforms body perception and the relationship with the surrounding environment. Furthermore, it analyzes how swimming practice contributes to improved quality of life and the construction of a “new normal”. The study emphasizes the importance of integrating subjective experience with practical management strategies, offering a perspective that complements conventional medical approaches. Additionally, it highlights the need to make the experiences of individuals with AS more visible and underscores the importance of continued research that considers body, mind, and social context. The findings suggest that, although AS-related pain can be overwhelming and limiting, adaptation and self-management processes can serve as valuable tools for coping with the disease and reframing the experience of suffering.