Submitted by James Cantwell on Fri, 31/10/2025 - 14:36
Autoimmune diseases, such as lupus and rheumatoid arthritis, can affect all aspects of patients’ lives, from physical and mental health to work, relationships and sense of identity, say researchers from the University of Cambridge and King’s College London.
In a study published in Rheumatology International, researchers surveyed 1,853 people living with systemic autoimmune rheumatic diseases (SARDs) and 463 members of the general population, as well as carrying out in-depth interviews with 34 people living with SARDs.
SARDs patients described mental, cognitive and physical symptoms which interacted and exacerbated one another, amplifying their joint impact.
One patient with undifferentiated connective tissue disease said: “I believe being constantly in pain, sick, and tired just increase physical and mental fatigue and vice versa. It's a vicious cycle of never feeling fully charged and well.”
Surveys revealed that people with SARDs had significantly lower satisfaction with life and participation in life compared to general population participants. This was reflected in interviews, where people with SARDs explained how unpredictable disease symptoms created challenges for making work or social plans, leading to social isolation.
Lead author Martha Piper from the Department of Public Health and Primary Care at the University of Cambridge said:
“One key finding is that people with SARDs had often had to step back from work or socialising temporarily at times of increased disease activity, but then struggled to reintegrate into these activities when symptoms improved due to a loss of confidence or having lost touch with friends or colleagues.”
Furthermore, symptoms were often invisible which could mean that friends, family and even medical professionals were unaware of the extent and range of symptoms experienced, increasing isolation and feeding into disease stigma.
One Sjögren’s patient said: “I look normal, so nobody understands how awful I feel inside.”
Disbelief from others could damage patients’ self-esteem and make them question whether they were making their symptoms up. Senior author Dr Melanie Sloan from the Department of Public Health and Primary Care at the University of Cambridge said:
“People need much more understanding and support with the life-changing impacts of autoimmune diseases. We are now working further with patients and charities to develop and trial interventions to reduce the impact and improve lives”
Self-esteem could also be impacted when disease symptoms were visible, such as rashes and hair loss, as one Sjogren’s patient said: “[In order to go back to work], I’d have to have a huge injection of confidence somehow, and a full set of gnashers.”
Changes to patients’ daily lives, appearance and relationships combined to trigger an upheaval in their sense of identity and they described re-evaluating their hopes for the future within the confines of their post-diagnosis self.
One lupus patient said: I'm half the person I was before I became unwell, I don't recognise myself"
Patients also had significantly lower wellbeing compared to general population participants, and this discrepancy was particularly large for items relating to having energy to spare, feeling good about themselves, feeling useful and feeling confident.
The research team is very grateful to the participants for taking part in this study and providing their views on living with an autoimmune condition. The research team would also like to thank all the collaborators involved in this study.
The full open access paper, “My world has shrunk”: a mixed-methods exploration of the impact of systemic autoimmune rheumatic diseases on patients’ lives” is available at: https://doi.org/10.1007/s00296-025-05993-2
This research was funded by The Lupus Trust, Lupus UK and Vasculitis UK. It forms part of the INSPIRE project (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences). This project was partially funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number NIHR207162). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.