Understanding chronic pain complicating disability: Finding meaning through focus group methodology

Abstract

While extensive literature exists on the experiences of people living with chronic non-malignant 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 four 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 disability-related 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 health care 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 pain from others in order to avoid conflict and maintain some semblance of their former lives. Always a factor in the equation emerged as the final theme. 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 in order to undertake activities and prevent exacerbation. It is vital for health care providers to give opportunities for people with MS 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 opportunities for therapeutic intervention can be facilitated.