Women With Autoimmune Diseases Wait About 4 Years for Diagnosis, Study Finds
A British online survey found women with autoimmune disorders such as lupus and rheumatoid arthritis waited about four years for a diagnosis, while men waited three months to under a year. Researchers say many women felt dismissed by doctors.
Women with autoimmune diseases often wait about four years for a diagnosis, while men wait roughly three months to under a year, according to an online survey by British researchers published in the journal eClinicalMedicine. Women with conditions such as lupus or rheumatoid arthritis were also more likely to be misdiagnosed or to get delayed treatment, with symptoms frequently dismissed as "psychological."
The findings add to earlier research showing gaps in how men and women with autoimmune disorders are diagnosed.
"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 a co-author of the study.
What autoimmune diseases are
Autoimmune diseases occur when the immune system mistakenly attacks the body. They include Type 1 diabetes, multiple sclerosis, inflammatory bowel disease and psoriasis. More than 23 million people in the U.S. have one, 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.
The federal Office on Women's Health says autoimmune conditions can affect anyone but are more common in women. The Lupus Foundation of America says around 90% of people with lupus are women.
Why diagnosis is slow
Many of these disorders share similar early symptoms: fatigue, dizziness and low-grade fever, as well as stress, anxiety and depression. That overlap makes them hard to diagnose.
Dr. Saira Z. Sheikh, director of the UNC Rheumatology Lupus Clinic in Chapel Hill, North Carolina, said women and men have similar symptoms. In women, though, "they develop over time, so it's often hard to recognize right at the beginning." Symptoms can appear in childhood and last through adulthood.
Researchers do not know why women are at greater risk. Research from the Mayo Clinic has suggested differences in the microbiome and sex hormones, and that women's bodies produce higher levels of antibodies linked to autoimmune disorders. A 2024 Stanford Medicine study found clues in a molecule connected to the X chromosome.
How the survey worked
The researchers recruited participants through social media, patient support groups and community groups for underserved populations, such as religious groups and homeless people. They translated the survey into five languages to reach diverse communities.
Participants shared data on when symptoms began and how many clinicians they consulted.
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