Experience of living with systemic sclerosis - a grounded theory study

Systemic sclerosis (scleroderma) is an autoimmune, rheumatic, and rare chronic and incurable autoimmune disease that damages healthy tissue within the skin, blood vessels, muscles, joints, connective tissues, nerves, vascular system and internal organs (Herndon, 2016). Living with systemic sclerosis is challenging as it affects every aspect of an individual's life, from family relationships to managing a job. People with scleroderma become reliant on others in order to perform everyday daily tasks such as dressing and bathing. Systemic sclerosis can cause significant changes in appearance, self-esteem and self-image that can lead to psychological setbacks (Diseases and Conditions, 2019).

The study aimed to explore and understand the process of participant’s experience to live with Systemic Sclerosis as well as to discover their coping strategies. In order to gain this aim, grounded theory was adopted in this study. Data were gathered through face-to-face semi-structured interview with six participants who met with inclusion-exclusion criteria. Memos were also used in data collections. The result derived Model ‘process of changed sense of self’ in experience to live with systemic sclerosis. It means that systemic sclerosis has impacted people's daily lives and cause the existential crisis. They experience disability, social isolation, despair, death anxiety, uncertainty and lack of freedom and responsibility. As a result of these phenomena they experience changed sense of self. Alongside using their regime, they use coping strategies to deal with their disease and to manage their lives and rebuild their new sense of self.

This study could assist health-care professional (psychologist, counsellor, psychotherapist, rheumatologist, and immunologist and rheumatology nurses) to have better understanding of people’ experience and psychological impact of disease and how they can cope with and learn to live with this disease and is also helpful to raise community awareness of Systemic Sclerosis and impact of disease on their daily lives.