Women with autoimmune conditions are up to 74% more likely than men to be told their symptoms are psychological or psychosomatic, and face much longer waits for a diagnosis and treatment, a study suggests.
Hundreds of millions of people – about one in 10 globally – are affected by autoimmune conditions, which can cause a range of health issues including fatigue, muscle pain and rashes.
But research by the University of Cambridge and University of East Anglia suggests a stark gender divide when it comes to how signs of the conditions are handled by doctors.
Women are more likely to have their conditions wrongly attributed to psychiatric causes, more likely to have symptoms misdiagnosed as psychosomatic, and more likely to experience delays in getting a diagnosis, according to the study.
The lead author, Melanie Sloan, said: “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.”
Sloan, a researcher in the department of public health and primary care at Cambridge and UEA, said some women were forced to wait years before finally getting a diagnosis, causing long delays to treatment for their condition.
The study, published in the Lancet eClinicalMedicine journal, included more than 6,600 people with autoimmune conditions. Most were female and from the UK.
Patients listed their main condition, with almost a quarter of the women having autoimmune thyroid disease, which can cause the gland to become underactive – known as Hashimoto’s disease – or overactive, known as Graves’ disease. Hashimoto’s disease can cause weight gain, hair loss, fatigue and joint pain, while the symptoms of Graves’ disease include bulging eyes, palpitations and weight loss.
One in seven women in the study had systemic lupus, which can cause tiredness, rashes and muscle pain.
Among male patients, rheumatoid arthritis, vasculitis and antiphospholipid syndrome (APS), also known as “sticky blood” syndrome, were the most common conditions.
Researchers found 43% of women reported being told their condition was down to a psychiatric cause compared with a third of men (33%).
A third (34%) of women also reported having symptoms misdiagnosed as psychosomatic – meaning they were triggered or worsened by stress or anxiety – compared with 22% of men.
Overall, after accounting for factors including age, disease group, continent and household finances, researchers said women were 46% more likely to report having received a psychiatric misdiagnosis, and 74% more likely to report a psychosomatic misdiagnosis than men.
Researchers also found women reported much longer periods between the onset of symptoms and receiving a diagnosis, as well as more healthcare consultations. Among men, the most frequently reported time to diagnosis was less than three months. Among women, it was one to two years.
Autoimmune conditions, which happen when the immune system attacks the body by mistake, can be complex to diagnose as they often present with symptoms common in the wider population.
The study team said “broader diagnostic challenges affect both sexes” but “females may face additional disadvantages”.
They added: “Historical biases in medicine may persist, including positioning females as less credible and emotional reporters of symptoms than males.”
Sloan said the findings “highlight that psychological or mental health explanations can be given too soon”.
She added: “This is true for both sexes, but our study suggests that females may be particularly vulnerable to these types of misdiagnoses.
“It is really important that symptoms are not automatically assumed to be psychological and for doctors to just say, ‘I believe you,’ to patients with symptoms that the doctors cannot see.”
Shaista Tayabali, a patient affected by an autoimmune condition who was part of the research team and a co-author of the study, said: “The differences between the sexes in misdiagnoses for people with autoimmune diseases is stark.
“The fact that females reported higher rates of psychiatric and psychosomatic misdiagnoses than males … 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.”
