Misdiagnosed Chronic Diseases Can Lead to Long-Term Harm to Physical and Mental Health, Study Reveals
A 'chasm of misunderstanding and miscommunication' is often experienced between clinicians and patients, leading to autoimmune diseases such as lupus and vasculitis being wrongly diagnosed as psychiatric or psychosomatic conditions, with a profound and lasting impact on patients, researchers have found.
A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services. Dr Melanie Sloan from the University of Cambridge led a study exploring patient-reported experiences from two large groups, each of over 1,500 patients, and in-depth interviews with 67 patients and 50 clinicians. The results are published in Rheumatology. Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing.
More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. Following these types of misdiagnoses, patients often then blamed themselves for their condition,
Clinicians highlighted how hard it was to diagnose autoimmune rheumatic diseases and that there was a high risk of misdiagnosis. Some doctors said they hadn’t really thought about the long-term problems for patients, but others talked about the problems in regaining trust.
The study authors recommend several measures for improving support for patients with autoimmune rheumatological diseases.
Ref: Sloan, M, et al. “I still can’t forget those words”: mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses. Rheumatology; 3 Mar 2025; DOI: 10.1093/rheumatology/keaf115
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