Objective:

To explore the lived experiences of patients with systemic sclerosis (SSc) and highlight the importance of these experiences in understanding the disease burden.

Approach:

Key Findings:

• SSc reshapes embodiment and self-perception, impacting social participation and future outlook.
• Patients experience a profound distance between their remembered and present bodies, affecting adherence and self-efficacy.

Interpretation:

The article advocates for a holistic approach to patient care in SSc, integrating quantitative assessments with qualitative experiences.

Limitations:

• Limited research on the experiences of men with SSc.
• The subjective nature of narrative medicine may not be universally applicable.

Conclusion:

Incorporating patients' lived experiences into clinical practice can enhance understanding and support for individuals with systemic sclerosis.

Source

Based on findings from:

The mirror of illness: identity, embodiment, and clinical care in systemic sclerosis

Neslihan Gokcen. Clinical Rheumatology, 2026.

https://link.springer.com/article/10.1007/s10067-026-08236-2

Attribution Notice

This content is an AI-generated, fully rewritten summary based on a published scholarly article. It does not reproduce the original text and is not a substitute for the original publication. Readers are encouraged to consult the source for full context, data, and methodology.