Written narratives to understand the experience of individuals living with fibromyalgia.

Abstract

To explore the experiences of individuals with fibromyalgia (FM) through written narratives (WN) and to preliminarily investigate the potential value of these narratives for healthcare professionals in assessing the overall perceived severity and disability experienced by individuals with FM. This cross-sectional study was conducted with 46 participants with a FM diagnosis. They were asked to complete a WN task that aimed to capture their personal experiences. The degree of severity and disability expressed in their texts was assessed by researchers, and participants were also asked to complete the Revised Fibromyalgia Impact Questionnaire (FIQR), the Hospital Anxiety and Depression Scale (HAD), and the Tampa Scale for Kinesophobia. Eight main themes were identified after qualitatively analysing the narratives provided by participants: story of their illness, FM characteristics, other illnesses, impact, coping strategies, social support, pain triggers and treatments. Pain emerges as a profound symptom affecting mental, physical, and social well-being, with diverse triggers and coping mechanisms. Participants highlighted difficulties in the diagnostic process, used multiple treatment strategies, and expressed a lack of understanding from healthcare professionals and society. There were significant correlations between researchers' assessments of severity and disability of the writings and FIQR and HAD scores. This study emphasises the value of narratives in capturing the multifaceted nature of FM experiences and hints at their potential for clinical understanding and management.