International study finds females with autoimmune diseases are significantly more likely to be misdiagnosed as having a psychiatric or psychosomatic condition. 

Researchers from the Universities of Cambridge and East Anglia (UEA) analysed the reported diagnostic experiences of 6,607 international participants with autoimmune diseases. They found that females were much more likely to face delays in getting a correct diagnosis and treatment.

Almost half of female participants (43%) reported that their autoimmune symptoms had previously been misattributed to a psychiatric cause, compared with 33% of males. The study found that females were also more likely to have their symptoms misdiagnosed as being psychosomatic. This was reported by 34% of females and just 22% of males.

Autoimmune diseases occur when the immune system mistakenly attacks the body’s own tissues. They include conditions such as rheumatoid arthritis, lupus and multiple sclerosis. Many autoimmune diseases are more common in females, and symptoms can affect multiple parts of the body and change over time. Initial symptoms such as fatigue, pain, sleep disturbance and low mood are common in the general population.

Males diagnosed much more quickly

Female study participants reported longer periods between the onset of symptoms and receiving their diagnosis, and required more healthcare consultations. Among males, the most frequently reported time to diagnosis was less than three months. Among females, it was one to two years.

“Patients with autoimmune diseases can present with symptoms that can initially be difficult to explain medically, and sometimes it can take months or years before a diagnosis becomes clear,” said Melanie Sloan, lead study researcher from the Department of Public Health and Primary Care, and Norwich Medical School at UEA. “Our findings highlight that psychological or mental health explanations can be given too soon. This is true for both sexes, but our study suggests that females may be particularly vulnerable to these types of misdiagnoses.”

After the researchers took into account factors such as age, disease group, continent and household finances, they found that females were almost 50% more likely to report having received a psychiatric misdiagnosis. Almost 75% of female participants were more likely to report getting a psychosomatic misdiagnosis than males. Yet, males (48%) reported being misdiagnosed with a different physical disease more than females (44%). 

Female symptoms not always believed

The study was co-designed with patients, charities and clinicians and it has uncovered important parts of the diagnostic journey that are not recorded in medical records, the researchers said.

“The differences between the sexes in misdiagnoses for people with autoimmune diseases are stark,” said Shaista Tayabali, co-author of the international study and a patient partner. “The fact that females reported higher rates of psychiatric and psychosomatic misdiagnoses than males, yet lower misdiagnoses for other physical diseases, suggests that historical gender biases remain a challenging aspect of the diagnostic journey. Although labels such as hysteria are outdated and fortunately rarely used nowadays, as women we still often have a harder time having our symptoms believed and therefore addressed accurately.”

The study authors added that the high rates of reported psychiatric, psychosomatic and alternative physical misdiagnoses among both sexes reflect the difficulty of diagnosing autoimmune diseases. Researchers are calling for doctors to consider autoimmune diseases before any psychiatric or psychosomatic diagnoses are given.

“This is not about saying that a psychiatric diagnosis is never correct,” said David D’Cruz, consultant rheumatologist at Guy’s Hospital. “People can have both autoimmune and psychiatric conditions, and it is increasingly understood that psychiatric symptoms can be part of an autoimmune disease, especially in diseases like lupus, which can directly affect the brain. They can also be a very natural response to living with life-changing illnesses,” he said.

“The important message is that when symptoms persist, evolve or involve multiple symptoms, clinicians must be open-minded and consider whether there is an underlying autoimmune disease that has not yet been recognised and listen to patients,” D’Cruz added.