Women with autoimmune conditions are up to 74% more likely than men to be told their symptoms are psychological or psychosomatic, and they wait much longer for a diagnosis, according to a study by researchers at the University of Cambridge and the University of East Anglia. The paper appeared in the Lancet’s eClinicalMedicine journal.
About one in 10 people worldwide live with an autoimmune condition, which can bring fatigue, muscle pain and rashes. The study drew on more than 6,600 people with such conditions, most of them female and from the UK.
What the numbers show
Patients named their main condition. Almost a quarter of the women had autoimmune thyroid disease, either underactive (Hashimoto’s) or overactive (Graves’), and one in seven had systemic lupus. Among men, the most common were rheumatoid arthritis, vasculitis and antiphospholipid syndrome, sometimes called “sticky blood” syndrome.
Some 43% of women said they had been told their condition had a psychiatric cause, against 33% of men. A third of women (34%) reported symptoms misdiagnosed as psychosomatic, meaning triggered or worsened by stress or anxiety, compared with 22% of men. After adjusting for age, disease group, continent and household finances, women were 46% more likely to report a psychiatric misdiagnosis and 74% more likely to report a psychosomatic one.
The waits differed too. The most common time to diagnosis for men was under three months. For women it was one to two years. Women also reported more healthcare consultations along the way.
What the researchers say
Autoimmune disease is hard to diagnose because the symptoms are often common in the wider population, and the team stressed that diagnostic difficulties affect both sexes. Even so, they wrote, “historical biases in medicine may persist, including positioning females as less credible and emotional reporters of symptoms than males.”
Lead author Melanie Sloan said psychological explanations can be offered too soon, and that some women wait years for treatment. “The damage caused to women by these types of misdiagnosis can be very long lasting in terms of trusting doctors and their own self-esteem,” she said. Her hope is that doctors will not automatically assume symptoms are psychological, and will simply say “I believe you” when they cannot see the problem.
The early findings suggest awareness could help, and patients with persistent, unexplained symptoms should talk to their doctor and ask for a thorough work-up.
Shaista Tayabali, a patient who was on the research team and co-wrote the study, put it plainly. Labels such as hysteria are outdated and rarely used now, she said, but “as women we still often have a harder time having our symptoms believed and therefore addressed accurately.”
