Although extensive literature exists on the experiences of people living with chronic nonmalignant pain as a primary condition, little is known about the phenomenon of pain as it is experienced by the person with a chronic disabling condition. This focus group study explored the experience of disability‐related pain among 32 people with multiple sclerosis (MS) living in the community. Thematic analysis of transcripts revealed 4 broad conceptualizations of the experience of living with chronic MS‐related pain. The first theme, pain is pervasive, described the overwhelming and intrusive presence of pain in daily life. Participants related the physical, emotional, and social consequences of living with chronic, disabilityrelated pain, which caused them great loss and restriction. The second theme resonated around feelings that nobody understands. The participants sought understanding and validation of their pain experiences by family, friends, and healthcare professionals and struggled with difficult issues concerning the legitimacy and invisibility of their pain. The third theme, I'm fine, referred to the propensity of participants to keep pain private from others. In part because of its contested nature, participants at times concealed their pain from others to avoid conflict and maintain some semblance of their former lives. The final theme that emerged was always a factor in the equation. The participants shared how MS had transformed their worlds into ones in which pain and discomfort had become a normal part of everyday life, requiring careful negotiation and planning to undertake activities and prevent exacerbation. It is vital that healthcare providers give people with MS opportunities to talk about pain and pain‐related concerns, validate their experiences, and provide interventions that enable self‐management. Clinicians are encouraged to challenge their own meanings and expectations about disability‐related pain so that therapeutic interventions can be facilitated.
Questions or comments about this article may be directed to Clint Douglas, PhD RN, at email@example.com. He is a lecturer in the School of Nursing at Queensland University of Technology, Kelvin Grove, Queensland, Australia.
Carol Windsor, BA (Hon) RN, is a lecturer in the School of Nursing at Queensland University of Technology, Kelvin Grove, Queensland, Australia.
Judy Wollin, PhD RN, is an associate professor and deputy head in the School of Nursing and Midwifery at Griffith University, Logan Campus, Meadowbrook, Queensland, Australia.