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A 6,600-Person Study Found A Gender Gap In Autoimmune Diagnoses
Persistent fatigue, unexplained joint pain, or brain fog can send you searching for answers.
But what happens when appointments come and go without a clear explanation? For people with autoimmune diseases, getting diagnosed can take years.
A new international survey published in eClinicalMedicine1 explored whether women and men experience this process differently, from how long diagnosis takes to how their symptoms are interpreted along the way.
About the study
Autoimmune diseases occur when the immune system mistakenly attacks the body's own tissues. Conditions such as lupus, rheumatoid arthritis, and autoimmune thyroid disease can cause symptoms that overlap with other health problems, making them difficult to identify.
Researchers surveyed 6,607 adults diagnosed with autoimmune or related inflammatory diseases.
Participants recalled how long diagnosis took, how many health care visits they needed, and whether their symptoms had been misdiagnosed as a mental health condition, a psychosomatic issue (when psychological factors cause or worsen physical symptoms), or another physical illness.
Most participants were white women living in the UK.
Women waited longer & reported more psychiatric misdiagnoses
The survey revealed several differences in women's and men's diagnostic experiences:
- Longer waits: Nearly one-third of the women surveyed reported waiting four years or longer for a diagnosis. Men were more likely to receive one within a year of their symptoms starting.
- More health care visits: Women reported attending more appointments before getting answers.
- More psychiatric or psychosomatic misdiagnoses: Women were more likely to say their symptoms had been attributed to a mental health condition, such as anxiety or depression, or to psychological factors. These differences remained after researchers accounted for age, disease type, and financial situation.
- Similar rates of other physical misdiagnoses: Women and men were similarly likely to report being misdiagnosed with a different physical illness.
The pattern also varied by condition. Type 1 diabetes and rheumatoid arthritis, which tend to have clearer diagnostic markers, were less often associated with psychiatric or psychosomatic misdiagnoses.
Conditions that are harder to identify showed this pattern more frequently.
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Why some autoimmune diseases are harder to diagnose
Early symptoms such as fatigue and pain can come and go, overlap with other conditions, and lack a single definitive test to confirm the cause. This can make autoimmune diseases challenging to identify.
The researchers also suggest gender-related bias may contribute to the gap. Women's physical symptoms have sometimes been attributed to stress or psychological causes rather than investigated further.
Perimenopause and menopause can add complexity, too, since symptoms such as fatigue, joint pain, and mood changes may overlap with those of autoimmune conditions.
The study can't explain why women reported longer delays or more psychiatric misdiagnoses. Participants had to recall experiences that may have happened years earlier, most were white and based in the UK, and people with negative diagnostic experiences may have been more likely to participate.
Researchers also didn't collect gender identity, so they couldn't separate biological sex differences from gender-related bias. The authors describe the research as exploratory, meaning further studies are needed.
What to do when symptoms persist
If you're still experiencing symptoms without a clear explanation, a few practical steps can help you make the most of your next appointment.
- Track symptoms between appointments: Note when they occur, how long they last, how severe they feel, and whether anything seems to trigger or relieve them. Include how they affect your sleep, work, or daily activities.
- Bring specific examples: Explain how symptoms affect your everyday life, such as needing to rest after routine tasks or struggling to concentrate. Concrete examples can help your health care provider understand what you're experiencing.
- Ask for a follow-up plan: If the cause remains uncertain, ask what possibilities are being considered, whether further testing or a specialist referral makes sense, and when to check back if symptoms continue.
- Consider a second opinion: If your symptoms persist and you feel your concerns haven't been fully addressed, it's reasonable to seek another qualified health care provider's perspective.
These steps won't guarantee a diagnosis, but they can help you communicate your experience and understand what happens next.
The takeaway
For nearly one-third of the women in this 6,607-person survey, getting an autoimmune diagnosis took at least four years.
The reasons for these delays aren't yet clear, but persistent symptoms deserve to be taken seriously, even when finding answers takes more than one appointment.
