“Everyone thinks I am just lazy”: Legitimacy narratives of Americans suffering from fibromyalgia

Abstract

This qualitative study reflects an analysis of 50 stories told by Americans living with fibromyalgia, a chronic condition marked by widespread physical pain. Stories were randomly collected from The Experience Project, an online public forum, and analyzed using the communication theory of identity as a guiding framework. Thematic analysis was used to examine how the legitimacy narratives of people with fibromyalgia respond to the American discourse of hard work. Three narrative themes emerged from the data: The Personal Experience of Living With Fibromyalgia (personal layer of identity), the Struggle to Complete Everyday and Professional Tasks (enacted layer of identity), and a Limited Ability to Perform Gender Roles (relational layer of identity). Throughout their stories, individuals with FM strive to legitimate their condition and contest the notion that they are lazy. Stories reveal that people suffering from fibromyalgia experience significant personal (e.g. cleaning the house) and professional (e.g. extended sick leave) challenges, as well as serious relational challenges that are often tied to gender roles (e.g. being a good mother). Results provide a variety of implications and directions for future research.

“It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram

“…They take care to express themselves in a proper way; one that involves not appearing "too strong or too weak, too healthy or too sick, too smart or too disarranged" (p. 1409). More generally, women with a contested illness anticipate challenges in bringing their stories across to others, and take care to convey their diligent attempts at overcoming chronic suffering (Paxman, 2019). Indeed, in her study on narratives of chronic fatigue syndrome, Bülow (2008a) argues that the very experience of being called into question is constitutive of the identity formation of women with a contested illness.…”

“…In the case of contested illness, moreover, being unable is readily mistaken for being unwilling to ascertain good health. In recent qualitative studies about contested illness and somatically unexplained symptoms, this sentiment is epitomized by the prevalence of accusations of laziness ( Paxman, 2019 ), slackness ( Østebye et al, 2018 ), and mental instability ( Sowińska, 2018 ) by health-care providers and others. To counter such accusations, “questions and judgments regarding illness origin and the validity of complaints are often in the narrative forefront” ( Swoboda, 2006 : 235).…”

“They say it’s because I’m migrainous. . .” Contested identities of students with invisible disabilities in medical consultations

“…In particular, although the students often adopt a rather active approach to their illness management, demonstrating their active engagement in self-diagnosis and decision-making processes, or their struggle to overcome barriers, they often construct passive identities in relation to their conditions, with symptoms constructed as if coming from the outside, and affecting their lives directly (cf. Groenevelt, 2021;Paxman, 2021;Sowińska, 2018Sowińska, , 2019.…”

Repetitive Transcranial Magnetic Stimulation for Fibromyalgia: An Updated Systematic Review and Meta-Analysis

“…It is a relatively new and controversial condition (2) that was coined by Philip Hench in 1976 (3) and recognized by the World Health Organization in 1990 (2). Many studies have emerged in recent years (4) to further improve the management (5) of this poorly understood entity that has an impact on quality of life (6).…”