Autoimmune Disease Misdiagnoses Can Cause Long-Term Harm

Doctors who dismiss symptoms of autoimmune diseases as psychiatric or psychosomatic can cause lasting harm, a University of Cambridge study has warned. 

Conditions such as lupus and vasculitis are often misdiagnosed, leading to serious consequences for patients’ physical and mental health. Researchers identified a “chasm of misunderstanding and miscommunication” between clinicians and patients with systemic autoimmune rheumatic disease (SARDs). This often results in misdiagnoses that damage trust in healthcare, with profound long-term effects, they said.

Patient Experiences and Mental Health Impact

The mixed methods study, published in Rheumatology, analysed responses from two cohorts of patients with SARDs. These included 1543 and 1853 patients, respectively, and featured in-depth interviews with 67 patients and 50 clinicians. 

Patients’ depression, anxiety, and mental wellbeing were assessed through validated instruments and patient-designed questionnaires. Participants also provided insights into their medical relationships and healthcare experiences. 

More than80% of patients reported that having their symptoms dismissed as psychiatric or psychosomatic, along with comments like “it’s in your head,” harmed their self-worth. For 72%, the experience remained upsetting even decades later. 

Participants were asked if they had ever been misdiagnosed with psychiatric or psychosomatic conditions, including depression, anxiety, psychosis, myalgic encephalomyelitis/chronic fatigue syndrome, functional disorders, stroke, autonomic dysfunction, fibromyalgia, or antiphospholipid syndrome. They were also asked whether a clinician had attributed their symptoms to psychosomatic, psychological, or lifestyle causes.

Distrust in Healthcare

Patients who experienced misdiagnoses were more likely to experience higher levels of depression and anxiety and lower levels of mental wellbeing. They were also more likely to report lower satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid seeking healthcare.

Lead author Melanie Sloan, PhD, a public health researcher at the University of Cambridge, highlighted the complexity of diagnosing autoimmune diseases. “There are so many possible symptom combinations, and patients often keep going back to their [general practitioner] with multiple different symptoms that are difficult to attribute to a specific disease initially,” she told Medscape News UK.

Sloan cited one general practitioner who likened the challenge of diagnosis to finding the autoimmune needle in the psychosomatic or psychiatric haystack. Misdiagnoses often occur when doctors attribute symptoms to mental health conditions without considering autoimmunity early on, she said.

Sloan endorsed the suggestion that multiple symptoms starting later in life are more likely to be an immune-mediated disorder than a psychological one. These types of misdiagnoses impacted well-being most severely. Researchers found no correlation with mental well-being scores between those correctly diagnosed within a year and those who took more than 10 years.

Overlapping Symptoms and Misinterpretations

Sloan noted that in addition to the mental health symptoms that occur during the course of the disease, an additional complication is that many of these SARDs have a neuropsychiatric prodrome, similar to some people with multiple sclerosis who experience depression several years before they have detectable lesions.

Previous studies have suggested that around 50% of systemic lupus erythematosus patients were initially misdiagnosed. Many accumulate multiple psychosomatic and/or psychiatric diagnoses both before and after diagnosis. People with lupus or rheumatoid arthritis may have mental health symptoms such as depression, anxiety, or mania that are early signs of the disease’s effect on the brain long before they have clear-cut symptoms that are detectable or testable, Sloan said. “This further complicates the situation because these prodromal symptoms are both mental health and a direct part of the disease.” 

This overlap complicates diagnoses. In some cases, an initial psychiatric diagnosis may have been correct, but the assumed cause was wrong. Additionally, being dismissed or misdiagnosed can lead to depression and anxiety, further reinforcing a psychiatric label.

Clinicians Underestimate the Impact

The study found that few of the clinicians interviewed were aware of the long-term harm caused by these misdiagnoses. Several explained that they thought they were being reassuring by telling patients that their symptoms were most likely to be psychological or stress related. “They were trying to help and not realising the severe repercussions that we have uncovered in this research,” Sloan said.

Co-author Mike Bosley, an autoimmune patient, stressed in a press release that clinicians needed to understand how a misdiagnosis of this sort could result in long-standing mental and emotional harm, as well as a loss of trust in doctors. “Everyone needs to appreciate that autoimmune conditions can present in these unusual ways,” and that “listening carefully to patients is key to avoiding the long-lasting harm that a mental health or psychosomatic misdiagnosis can cause.”

Call for Change

Commenting on behalf of the Lupus Trust, which part-funded the study, campaign director Angie Davidson told Medscape News UK: “We see time and time again patients joining us who have experienced this type of misdiagnosis, and the damage that has caused. We are saddened to see these results, but they are exactly our experience anecdotally.” 

Davidson urged healthcare providers to correct past misdiagnoses when a definitive autoimmune diagnosis is made. She noted that many patients fear being judged by future doctors who see their list of previous ‘diagnoses’. A written correction could acknowledge that these earlier misdiagnoses were likely part of the onset of autoimmunity. 

Sloan, Bosley, and Davidson received funding for this study from LUPUS UK and The Lupus Trust. 

Dr Sheena Meredith is an established medical writer, editor, and consultant in healthcare communications, with extensive experience writing for medical professionals and the general public. She is qualified in medicine and in law and medical ethics.