Introduction: Systemic sclerosis (SSc) is a rare autoimmune connective tissue disease that affects multiple systems, involving the skin and internal organs. Patients with SSc report high levels of psychological symptoms such as depression, anxiety, and somatization. However, few studies have explored the lived experience of how the disease impacts their lives.
Purpose: The aim of the present study is to explore the shared symbolic representation of the illness and its related impact on the lives of patients with SSc.
Method: Forty-seven women with SSc (mean age = 52.98 years; SD = 12.84; mean years since diagnosis = 10.31) were recruited from patients attending the Department of Vascular Medicine and Autoimmunity at Sandro Pertini Hospital in Rome. Participants completed a socio-demographic questionnaire and an interview focused on the impact of the disease on their past, present, and future lives. The interviews were recorded, transcribed, and analyzed using Emotional Text Mining.
Results: The analysis revealed three symbolic-cultural categories or factors: the first axis describes "Restructuring the Meaning of Life"; the second axis describes the "Onset of the Illness"; the third axis refers to "Being in Relationship." Nine clusters or themes were identified: "Adaptation" (1); "The Search for a Solution" (2); "Managing Pain" (3); "The End of Carefreeness" (4); "Feeling Misunderstood" (5); "Finding Strength" (6); "Family" (7); "Daily Life" (8); "Relationship with Doctors" (9). The results highlight a split between Factor 1 and Factor 2, which seems to reveal an irreconcilability between internal dimensions and the illness, indicating a gap in the emotional processing of their life experiences.
Conclusions: These findings shed light on the illness experience of individuals with SSc from a symbolic and emotional perspective. The analysis allows us to hypothesize specific interventions in hospital settings aimed at reconnecting internal and external dimensions in the psychological adjustment to the disease.