Post Your Journey: Instagram as a Support Community for People With Fibromyalgia

Qual Health Res. 2019 Jan;29(2):237-247. doi: 10.1177/1049732318789102. Epub 2018 Aug 1.

Abstract

Fibromyalgia is a chronic illness with primary symptoms of widespread pain and fatigue. Social media applications have become a recent resource allowing individuals with fibromyalgia to interact in a virtual community devoted to the illness. This study explores how such a community develops and maintains itself on Instagram and the ways it creates social capital for its users. Data are derived from Instagram posts and open-ended questionnaires completed by users living with fibromyalgia who use the application. Using content analysis and semiotic methodology, the study analyzes the diverse ways in which users shared their experiences with fibromyalgia, the management of its symptoms, and issues encountered in accessing health care systems. Instagram aids in the development of a community by facilitating intimate and supportive interactions about the illness and the creation of personalized day-to-day narratives accessible to all. Norms of trust, acceptance, and reciprocity characterize the diversity of interactions in this community.

Keywords: Canada; Instagram; community; fibromyalgia; qualitative methods; social capital; support.

MeSH terms

  • Chronic Disease
  • Fatigue / etiology
  • Fatigue / psychology
  • Fibromyalgia / complications
  • Fibromyalgia / psychology*
  • Health Services Accessibility / organization & administration
  • Humans
  • Interpersonal Relations
  • Self-Help Groups / organization & administration*
  • Sleep / physiology
  • Social Media / statistics & numerical data*
  • Social Stigma
  • Social Support*
  • Trust