The Experience of Emotional Distress Among Women With Scleroderma

Abstract

Emotional distress is common among patients with chronic medical illnesses, but the nature of the distress is not well understood. Our objective was to understand patients' experiences of emotional distress by conducting in-depth interviews using the McGill Illness Narrative Interview with women affected by scleroderma (N = 16). We sought to determine how participants described their distress, what they believed caused it, and how they coped. We analyzed interview transcripts using thematic analysis. Many participants described distress associated with scleroderma, but the term depression was reserved for extraordinary, severe experiences. Instead, participants preferred more normal mood descriptors and often viewed their distress in keeping with the definition of "demoralization." Participants listed concrete symptoms and experiences that caused distress, and some added that stress could exacerbate scleroderma. Participants dealt with distress by not dwelling on their circumstances and working to maintain autonomy. Most preferred to not rely on psychologists and support groups.