Healthcare (Commonwealth Union) – A significant gap in understanding and communication often exists between healthcare professionals and patients, leading to autoimmune conditions like lupus and vasculitis being misdiagnosed as psychiatric or psychosomatic disorders. This misdiagnosis can have deep and lasting effects on patients, according to recent research.
A study that consisted of more than 3,000 participants—comprising both patients and clinicians—revealed that these incorrect diagnoses, sometimes dismissed as being “all in your head” by patients, frequently result in long-term harm to physical health, emotional well-being, and trust in medical care.
Researchers are urging greater awareness among clinicians about the symptoms of these complex diseases, acknowledging their diagnostic challenges, and advocating for improved patient support.
Autoimmune rheumatic diseases, including rheumatoid arthritis, lupus, and vasculitis, are chronic inflammatory conditions that impact the immune system and can cause widespread organ and tissue damage. Their diagnosis is particularly challenging due to the wide-ranging and often invisible symptoms, such as severe fatigue and depression.
Dr. Melanie Sloan from the University of Cambridge led a study analyzing patient experiences through two large-scale surveys, each with more than 1,500 participants, alongside in-depth interviews with 67 patients and 50 clinicians. The findings were published recently in Rheumatology.
Patients who shared that their autoimmune disease had been wrongly attributed to psychological or mental health issues were more likely to struggle with increased levels of anxiety and depression, as well as poorer overall mental well-being. One individual with multiple autoimmune conditions said “One doctor told me I was making myself feel pain and I still can’t forget those words. Telling me I’m doing it to myself has made me very anxious and depressed.”
Over 80% of patients reported that the misdiagnosis had negatively affected their self-esteem, while 72% said the experience continued to distress them, sometimes even decades later. Those who had been misdiagnosed also expressed lower satisfaction with all aspects of their medical care and were more prone to distrusting doctors, minimizing their symptoms, and avoiding healthcare altogether. One patient described how the experience shaped their behavior saying that it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.
After such misdiagnoses, many patients internalized blame for their illness. As one individual explained: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”
Dr. Melanie Sloan, from the University of Cambridge’s Department of Public Health and Primary Care, indicated that while many doctors aim to reassure patients by attributing initially unexplained symptoms to psychosomatic or psychiatric causes, these misdiagnoses can have serious consequences. They can deeply affect patients’ emotions, self-esteem, and overall care, with the damage often persisting even after a correct diagnosis is made. She further emphasized the need to do more to support these patients in their recovery and to educate clinicians on the importance of considering autoimmune conditions earlier in the diagnostic process.
Medical professionals acknowledged the challenges in diagnosing autoimmune rheumatic diseases and the significant risk of misdiagnosis. Some admitted they had not fully considered the long-term effects on patients, while others recognized the difficulty of rebuilding trust. One GP from England pointed out that patients lose faith in everything they’re told and they try to reassure them, but they will state that a doctor told them that before, and they were wrong.
The study authors propose various strategies to enhance assistance for patients suffering from autoimmune rheumatological diseases. These recommendations may also prove beneficial for other patient groups with chronic conditions that are frequently misinterpreted and misdiagnosed initially.
