• Posted March 3, 2025

Patients Devastated When Docs Dismiss Autoimmune Ailments As Psychosomatic

MONDAY, March 3, 2025 -- A patient with multiple autoimmune diseases can remember the exact moment a doctor tore their heart out.

“One doctor told me I was making myself feel pain, and I still can’t forget those words,” the patient remembered. “Telling me I’m doing it to myself has made me very anxious and depressed.”

Autoimmune diseases like lupus and vasculitis can be tricky to diagnose, with multiple physical and mental symptoms that are often seemingly unconnected and hard to pin down.

As a result, doctors frequently float the idea that a person’s symptoms might be psychosomatic -- essentially, all in their head.

That has led to a “chasm of misunderstanding and miscommunication” between doctors and patients, resulting in a profound and lasting mistrust of medicine for many people, according to a new study in the journal Rheumatology.

More than 80% of patients reported having damaged self-worth after a doctor said their problem was psychosomatic or psychiatric in nature, researchers report.

Another 72% said they were still upset about the experience, even though months or years have passed.

“Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care,” lead researcher Dr. Melanie Sloan with the University of Cambridge said in a news release.

“These appear to rarely be resolved even after the correct diagnoses,” she said. “We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage.”

For this study, researchers analyzed survey data on nearly 3,400 patients diagnosed with a systemic autoimmune rheumatic disease. They also conducted in-depth interviews with 67 patients and 50 clinicians.

Results showed that patients whose disease was dismissed as psychosomatic or a mental health problem were more likely to experience higher levels of depression and anxiety, as well as overall worse mental wellbeing.

“When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge,” one patient recalled. “Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

Patients also reported lower levels of satisfaction with every aspect of medical care, and were likely to mistrust doctors and avoid health care services.

One patient said their experience “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words.”

For their part, doctors highlighted how hard it is to diagnose these diseases. 

Some said they hadn’t really thought about the long-term problems caused by calling symptoms psychosomatic, but others said they had firsthand experience in caring for patients who feel they’ve been gaslit, researchers report.

“They lose trust in anything that anyone says,” one English doctor said. “You are trying to convince them that something is OK, and they will say 'yes, but a doctor before said that and was wrong.' ”

Co-researcher Mike Bosley is an autoimmune patient himself. 

“We need more clinicians to understand how a misdiagnosis of this sort can result in long-standing mental and emotional harm and in a disastrous loss of trust in doctors,” he said in a news release.

“Everyone needs to appreciate that autoimmune conditions can present in these unusual ways, that listening carefully to patients is key to avoiding the long-lasting harm that a mental health or psychosomatic misdiagnosis can cause,” Bosley added.

Doctors need to be more careful before labeling symptoms as psychosomatic, researchers said.

Training can help docs consider autoimmune disorders when assessing patients who have multiple, seemingly unconnected physical and mental health problems, the study says.

In addition, health services can provide more access to therapy for patients who’ve been negatively affected by a misdiagnosis.

“Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians of how they present, we can hopefully reduce the risk of misdiagnoses,” senior researcher Felix Naughton, a professor of health psychology with the University of East Anglia in the U.K., said in a news release.

“And while there will unfortunately inevitably still be patients whose condition is not correctly diagnosed, with the correct support in place, we may be able to lessen the impact on them,” he concluded.

More information

Johns Hopkins Medicine has more on autoimmune disease.

SOURCE: University of Cambridge, news release, March 2, 2025