Dr Melanie Sloan from the University of Cambridge led a new study exploring the impact of Systemic autoimmune rheumatic diseases (SARDs) on patients lives.
Systemic autoimmune rheumatic diseases (SARDs) which can involve physical, cognitive and mental health symptoms can have a far-reaching impact, with patients reporting moderate to severe impacts on their quality of life (QoL), work and daily activities, emotional well-being, personal relationships and the lives of close relatives.
Results highlighted how interacting, invisible and unpredictable symptoms impact patients’ relationships and participation in daily life where SARDs patients self-reported significantly lower satisfaction with life and higher depression and anxiety scores compared to general population participants.
The complex, unpredictable and invisible symptoms of their diseases meant that many patients had had to withdraw from hobbies, social activities and work, which made them feel like “my world has shrunk” (multiple patients). The physical manifestations of their disease, such as musculoskeletal pain, mobility issues and fatigue, limited patients’ ability to engage in activities they enjoyed, which reduced quality of life.
Many patients explained how the “invisible” nature of their symptoms affected the awareness of others because they looked unchanged from before the onset of their disease. “Because I look and behave like a perfectly normal healthy person and don't' look ill' people often expect too much of me, e.g. ask me to help them lift heavy things, etc, and then are disappointed with me when I can't. I feel like I'm swinging the lead sometimes.”
Patients also explained how not being understood or believed by loved ones, colleagues and doctors led to “a lot of self-doubting”. They recalled questioning whether their symptoms were so debilitating, or whether they were imagining them and “using the conditions as an excuse”.
When asked about the impact of SARDs on their lives, patients often expressed initial bewilderment or frustration at the question and explained that it was impossible to define the impact because they did not know what their life would have been like if they hadn’t had their disease. SARDs were described as all-encompassing and life-altering, such that many patients could not imagine their lives without their disease.
For the full study please click here.
The Lupus Trust has helped fund this study.
