Women With Autoimmune Conditions Told It's All 'In Their Head', Study Finds

Autoimmune diseases – where the body mistakenly attacks its own cells, tissues, or organs – disproportionately affect women.

In fact, some research suggests women face four times the risk of developing an autoimmune condition (like lupus, rheumatoid arthritis, and multiple sclerosis) compared with men. 

Stanford Medicine writes that as many as four out of five autoimmune disease patients are female.

This might make the findings from a new paper, published in The Lancet’s eClinicalMedicine, even more frustrating. 

Women’s autoimmune conditions are likelier to be misdiagnosed as psychiatric issues, study finds

After looking at the experiences of 6,607 people with autoimmune diseases, University of Cambridge and University of East Anglia researchers found that 43% of women reported having their (confirmed) chronic conditions misdiagnosed as a psychiatric issue, compared to 33% of men. 

And 34% of women with autoimmune conditions were told their health problems were “psychosomatic” – caused, or worsened, by psychological factors – while for men, that figure was 22%. 

After taking into account factors like age, disease group, wealth, and location, the study suggested that women were about 75% more likely than men to report a psychosomatic misdiagnosis, and 50% as likely to report a psychiatric misdiagnosis. 

Men, however, saw slightly more physical-based misdiagnoses – where doctors and other medical professionals ascribed their autoimmune symptoms to another non-mental condition – at 48% (vs 44% for women).

The University of East Anglia’s Dr Melanie Sloane, who was involved in this research, said: “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.

“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.”

Women also wait longer for diagnoses

The same paper found that women tended to report a longer wait time between the onset of their autoimmune symptoms and also said they attended more consultations to receive these.

On average, men with autoimmune conditions said it took them less than three months to receive their diagnosis. For women, that figure was one to two years. 

Wendy Diment, a patient partner involved in the study, said: “Most studies use medical records, but these are very one-sided as patients’ views are very rarely recorded and we often have different views on what is causing our symptoms to our doctors.

“They also don’t always record when we first became unwell and the difficulties in getting our diagnosis, and they’re very unlikely to be corrected when a psychosomatic ‘in your head’ type diagnosis is then found to be wrong.”

And Dr Sloan ended, “Ultimately, we need to understand why these differences occur before we can design effective solutions.

“Our next step is exploring the experiences and voices behind these numbers and working with patients and clinicians to identify ways of reducing diagnostic delays and improving care. Listening to and valuing people’s accounts and views should always be part of research and the diagnostic process.”