E3 PreliminaryPreliminaryPEM not requiredCross-SectionalPeer-reviewedMachine draft
Standard · 3 min
Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia.
Asbring, P · Journal of advanced nursing · 2001 · DOI
Quick Summary
This study looked at how women with ME/CFS and fibromyalgia experience major changes to their sense of self and identity after becoming ill. Researchers interviewed 25 Swedish women about how they adjusted to these illnesses, and found that while the conditions caused significant disruption to their work and social lives, many women also discovered unexpected positive aspects of their new identity as they adapted.
Why It Matters
Understanding how ME/CFS fundamentally alters patients' sense of identity and self-concept is crucial for comprehensive patient care and recognition of the profound psychosocial impact of these conditions. This study highlights that identity transformation involves both significant losses and unexpected gains, which can inform more holistic support strategies that acknowledge the complex psychological adaptation process.
Observed Findings
Women with CFS and fibromyalgia experienced radical disruptions to their biographical narratives, particularly affecting work and social identity
Biographical disruptions varied in severity; many were partial rather than total, requiring different degrees of identity adaptation
Participants described losing aspects of their former identities (e.g., professional roles, social connections)
Many women reported unexpected positive outcomes or 'illness gains' alongside identity losses
Women engaged in active biographical work to re-evaluate and reconstruct their sense of self post-illness
Inferred Conclusions
Chronic illness like ME/CFS and fibromyalgia constitutes a significant biographical disruption that demands psychological and social identity reconstruction
Identity transformation is a complex process involving simultaneous experience of losses and gains, not purely negative outcomes
Women actively engage in meaning-making work to integrate illness experiences into their identities
Comprehensive illness experience encompasses both adversity and unexpected positive dimensions
Remaining Questions
How do identity transformation processes differ across gender and cultural contexts?
What This Study Does Not Prove
This qualitative study does not establish causality or provide quantitative prevalence data about identity disruption across all ME/CFS and fibromyalgia populations. The findings are specific to Swedish women and may not generalize to other demographics, healthcare systems, or cultural contexts. The study cannot determine whether observed identity changes are directly caused by illness symptoms versus psychosocial responses to diagnosis and social factors.
Tags
Symptom:Fatigue
Method Flag:Weak Case DefinitionSmall SampleExploratory Only
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →