Invisible, Uncontrollable, Unpredictable: Illness Experiences in Women with Sjögren Syndrome

Overview

Journal J Clin Med

Specialty General Medicine

Date 2024 Jun 19

PMID 38892941

Authors

Andrea Herrera

Loreto Leiva

Iris Espinoza

Matias Rios-Erazo

Nailah Shakhtur

Pamela Wurmann

Gonzalo Rojas-Alcayaga

Affiliations

Soon will be listed here.

Abstract

: Sjögren's Syndrome (SS) is a chronic degenerative rheumatic disease. Because of its chronic nature, it significantly affects the quality of life of those who suffer from it. : This qualitative study investigated disease experience among women suffering from SS to understand its impact on their overall well-being. In-depth interviews were conducted with 15 women who suffer from SS. Interviews were analyzed using the Grounded Theory methodology, using open, axial, and selective coding. : Three central phenomena of disease experience were identified: invisibility; uncontrollability; and unpredictability. : SS disease experience has a strong imprint on emotional well-being and sense of self-control among middle-aged women. Understanding SS impacts on women's lives is important to better understand the disease and contribute to recognizing potential areas of management and social support in relevant windows of opportunity within the health-disease continuum.

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