
Women with autoimmune diseases such as lupus or rheumatoid arthritis are more likely to be misdiagnosed or get delayed treatment compared with men, with their symptoms often dismissed as “psychological.”An online survey by British researchers found that it took women with an autoimmune disorder about four years to get a diagnosis, while it took men around three months to less than a year.It adds to previous research showing disparities in diagnosis between men and women with autoimmune disorders.“Women in particular felt not listened to or not heard or not believed by their medical professionals,” said Sydnae Taylor, a doctoral researcher at the University of Oxford in the U.K. and co-author of the study published recently in eClinicalMedicine.Autoimmune diseases — including Type 1 diabetes, multiple sclerosis, inflammatory bowel disease and psoriasis — occur when the immune system mistakenly attacks the body. More than 23 million people in the U.S. have an autoimmune disease, and most of them are women.Autoimmune thyroid disease, which includes Hashimoto’s, was the most common type reported by women in the survey. It typically causes fatigue, unexplained weight gain and sensitivity to cold, among other symptoms.Autoimmune conditions can affect anyone but are more common in women than in men, according to the federal Office on Women’s Health. For example, around 90% of people with lupus are women, according to the Lupus Foundation of America.It’s not clear why women are more at risk. Research from the Mayo Clinic has suggested differences in the microbiome, sex hormones and that women’s bodies produce higher levels of antibodies that are associated with autoimmune disorders. A 2024 Stanford Medicine study found clues in a molecule connected to the X chromosome.Because many of the disorders share similar symptoms in the early stages — fatigue, dizziness, low-grade fever, as well as stress, anxiety and depression — they can be difficult to diagnose.Women and men have similar symptoms, but with women specifically, “they develop over time, so it’s often hard to recognize right at the beginning,” said Dr. Saira Z. Sheikh, the director of the UNC Rheumatology Lupus Clinic in Chapel Hill, North Carolina. Symptoms can appear during childhood and last throughout adulthood.The survey was conducted through social media, patient support groups and community groups of underserved populations such as religious groups and the homeless population. It was translated into five languages as a way to reach diverse communities.Participants shared data about symptom onset, how many clinicians were consulted and misdiagnosis. The data was then compared between men and women. Out of the 6,607 participants, 91.2% were women and the majority of them were from the United Kingdom.Misdiagnosis is more likely when symptoms are “invisible,” meaning they aren’t detected in a blood test or involve pain, fatigue and neurological symptoms such as tingling, Taylor said.In these situations, accurate diagnoses rely on doctors listening and believing the patient.“We shouldn’t assume that women’s symptoms are psychological simply because the initial investigations are inconclusive,” Sheikh said.


