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

Area of Science:

• Rheumatology
• Psychology
• Sociology

Background:

• Sjögren's Syndrome (SS) is a chronic, degenerative rheumatic disease.
• SS significantly diminishes the quality of life for affected individuals due to its persistent nature.

Purpose of the Study:

• To investigate the lived experiences of women with Sjögren's Syndrome.
• To understand the profound impact of SS on overall well-being and daily life.

Main Methods:

• Qualitative study employing in-depth interviews with 15 women diagnosed with SS.
• Grounded Theory methodology utilized for data analysis, including open, axial, and selective coding.

Main Results:

• Three core themes emerged: the invisibility of the disease, its uncontrollability, and its unpredictability.
• These phenomena significantly affect patients' emotional state and sense of personal control.

Conclusions:

• The experience of Sjögren's Syndrome profoundly impacts middle-aged women's emotional health and self-perception of control.
• Recognizing these impacts is crucial for advancing disease understanding, management strategies, and social support systems.