Iatrogenic dys-appearance: first-person accounts of chronic neuromuscular disease reveal unintended harms of treatment

Abstract

Background: Quantitative methods and a biomedical concept of the body dominate research in physiotherapy, and physiotherapists’ knowledge of best practices is usually valued higher than patients’ knowledge/values. Yet qualitative research on the lived experience of chronic neuromuscular disease can provide valuable insights for treatment priorities. The concepts of bodily ‘dys-appearance’ (Leder) and ‘eu-appearance’ (Zeiler) provide a foundation.Methods: Two first-person accounts of living with chronic neuromuscular disease were subjected to close thematic analysis.Results: Well-intentioned efforts on the part of healthcare providers to follow ‘best practices’ can result in unintended harm to patients’ wellbeing, particularly in the form of what we term iatrogenic dys-appearance.Conclusions: Guidelines are suggested for future research and practice in physiotherapy, including a critical ethics and holistic respect for patients’ knowledge about their bodies/lived experience. Literature about illness, especially life writing, provides a potentially useful tool for developing the empathetic imagination of healthcare professionals.