Women With Autoimmune Disease Keep a Sticky Psych Label

Women with autoimmune disease were given a psychiatric explanation in 43.3% of cases, against 32.7% of men, in a 6,607-person survey. Women’s most common wait for a correct diagnosis was one to two years; men most often waited under three months.

The harder problem sits one step on. A psych note, once written, is unlikely to be crossed out, so the next clinician starts from the wrong story.

The Survey Caught What Records Leave Out

Melanie Sloan, from the University of Cambridge and Norwich Medical School at the University of East Anglia, led an international survey of 6,607 autoimmune patients with colleagues including David D’Cruz and Arvind Kaul. The paper went up in eClinicalMedicine, a Lancet journal, on October 12, 2026.

People aged 18 or older could join if a clinic letter confirmed an autoimmune or inflammatory rheumatic disease. The form ran on Qualtrics from December 7, 2024, to March 7, 2025. Patients, charities, and clinicians helped write it. Diagnostic questions sat inside a wider “challenges in care” survey, and the ads were kept neutral so the sample would not be stacked with people already angry about delay.

WHO ANSWERED THE SURVEY

• Sex mix: 91.2% of the 6,607 people were female.
• Ethnicity: 87.8% identified as White.
• Place: 69.7% lived in the UK.
• Window: Responses were collected between December 7, 2024, and March 7, 2025.

Wendy Diment, a patient partner on the study, said most research leans on clinic notes, which almost never log the patient’s view of what is wrong, or when the illness actually started. “They’re very unlikely to be corrected when a psychosomatic ‘in your head’ type diagnosis is then found to be wrong,” she said.

That is the second blow. The first wrong call does not stay in one appointment. It becomes the opening line of the file.

Women’s Most Common Wait Was One to Two Years

Among 6,284 people who gave a time from first symptoms to diagnosis, the single most common bin for men was under three months (21.2%). For women it was one to two years (15.7%), the figure that has been flattened online into an “average” three-month wait for men and a two-year wait for women. A modal bin is not a mean, and 21.2% is not most men.

The wider split is still ugly. 49.7% of men said they were diagnosed within a year of symptom onset, against 39.7% of women. At the long end, 31.8% of women waited four years or more, against 25.5% of men. 26.2% of women reported 11 or more clinic visits before the autoimmune disease was named, against 18.4% of men.

After age, disease group, continent, and household finances were taken into account, women had 1.46 times the odds of a psychiatric misdiagnosis (95% CI 1.14 to 1.87) and 1.74 times the odds of a psychosomatic one (95% CI 1.31 to 2.32). Cambridge’s own note on the work put the finding in plainer words: females less likely to be believed than males, with longer waits attached.

WOMEN AND MEN ON THE PATH TO DIAGNOSIS

A different physical disease was reported as a wrong turn slightly more often in men (47.6%) than in women (43.5%). That gap was not statistically significant (p = 0.131). The sex split that holds is the mental one, not every kind of error.

Why Fatigue and Pain Get Called Psychiatric First

Autoimmune disease happens when the immune system attacks the body’s own tissue. Sloan’s paper puts females at about 70 to 80% of cases worldwide, a skew the US National Institute of Arthritis and Musculoskeletal and Skin Diseases has been funding work to explain, including research on why women are disproportionately affected.

Early signs are ordinary. Fatigue, pain, broken sleep, and low mood show up in many illnesses and in hard weeks at work. They can also move around the body and change from month to month. Blood tests are often thin at the start. In that fog, a mental-health story is a fast story.

Sloan said patients can present with symptoms that are hard to explain at first, and that it can take months or years before a diagnosis is clear. “Our findings highlight that psychological or mental health explanations can be given too soon. This is true for both sexes, but our study suggests that females may be particularly vulnerable to these types of misdiagnoses,” she said.

Shaista Tayabali, a co-author and patient partner, pointed at the pattern the physical-error numbers make visible. Women reported more psychiatric and psychosomatic labels than men, yet fewer wrong physical diagnoses. “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,” she said.

Once that mental-health line is in the notes, later rashes, joint swelling, or lab changes get read through it. A heart scare gets filed as anxiety. Weight change from a mood drug gets filed as proof the first call was right. The file teaches the next doctor what to see.

The Psychosomatic Note Rarely Gets Crossed Out

Sloan’s group had already measured what those labels do after the autoimmune disease is finally named. In a Rheumatology paper dated March 3, 2025, they looked at lasting harm after psychosomatic misdiagnosis in systemic autoimmune rheumatic disease, using two patient groups of more than 1,500 each and interviews with 67 patients and 50 clinicians.

WHAT THAT EARLIER STUDY SAID THE LABELS LEFT BEHIND

• Self-worth: More than 80% of patients who reported a psychosomatic or psychiatric misdiagnosis said it had damaged their self-worth.
• Time: 72% said the misdiagnosis still upset them, often decades later.
• Care: Those patients reported lower satisfaction with every part of medical care than patients who did not report such labels.
• Behaviour: They were more likely to distrust doctors, play down new symptoms, and stay away from clinics.

Sloan said many doctors had meant to reassure when they reached for a psychosomatic or psychiatric cause. The effect did not match the intent.

These types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care. These appear to rarely be resolved even after the correct diagnoses.

Melanie Sloan, University of Cambridge and University of East Anglia, March 2025

Mike Bosley, an autoimmune patient and co-author on that paper, said clinicians need to treat the loss of trust as part of the injury, not a side issue. One GP in that study described the later visit: you try to say something is all right, and the patient answers that a doctor said that before and was wrong.

Diment’s point on uncorrected notes sits on top of that. If the psychosomatic line is still in the record, the apology in clinic does not travel with the file. The next person opens the old story first.

Type 1 Diabetes and Rheumatoid Arthritis Show Lower Rates

Disease group itself predicted who got a mental-health or psychosomatic label. Conditions with visible signs or firmer blood markers, the paper names type 1 diabetes and rheumatoid arthritis, had lower rates. Diseases that start as fatigue, brain fog, or pain with little to show on the skin or in a standard panel had a harder climb.

That cut runs through the sex finding rather than wiping it out. After the team adjusted only for disease group, women still had 1.56 times the odds of a mental-health misdiagnosis and 1.87 times the odds of a psychosomatic one. Adding age, continent, and money moved those figures to 1.46 and 1.74. The gap is not only “women get the diseases that look vague.”

High rates in both sexes also tell a simpler clinical truth. 32.7% of men still reported a psychiatric misattribution. Autoimmune disease is hard to catch in general practice, where most people arrive first, and the paper calls its own work exploratory. Recall can smear dates. A sample that is 91.2% female, 87.8% White, and 69.7% UK cannot speak for every clinic.

Sloan said the group still has to learn why the differences occur before it can design a fix. The next step, she said, is the voices behind the counts, with patients and clinicians, on how to shorten waits and cut these misdiagnoses.

Lupus Can Involve the Brain and Still Be Missed

David D’Cruz, consultant rheumatologist at Guy’s Hospital, refused the cartoon version of the result. A psychiatric diagnosis is sometimes right. People can have both an autoimmune disease and a psychiatric illness. Psychiatric symptoms can also be part of the autoimmune disease, especially in lupus, which can affect the brain. They can also be a straight response to a life-changing illness. The NHS already lists that lupus can cause depression and anxiety among its possible signs, alongside joint pain, rashes, and extreme tiredness that rest does not fix, and it warns that lupus is not always easy to diagnose because the picture overlaps other conditions.

The important message is that when symptoms persist, evolve or involve multiple systems, clinicians must be open minded and consider whether there is an underlying autoimmune disease that has not yet been recognised, and to listen to patients.

David D’Cruz, consultant rheumatologist, Guy’s Hospital

The team asked doctors to consider autoimmune disease before they lock in a psychiatric or psychosomatic label, to say when a patient should come back, and to reopen an old call when new signs appear. Continuity of care is part of that, because a new face with an old psych note is how the delay repeats.

The 2026 counts show who waits. The 2025 interviews show what the wait does to the next appointment. Sloan said listening to people’s own accounts should be part of research and of diagnosis. The file will not do that work on its own.

Frequently Asked Questions

How was the 6,607-person autoimmune survey carried out?

It ran on Qualtrics from December 7, 2024, to March 7, 2025, and was open to anyone 18 or older with an autoimmune or inflammatory rheumatic disease confirmed in clinical correspondence. Cambridge Psychology Ethics Committee approval is logged as PRE 2024.062, and the protocol sits on the Open Science Framework. Ads and the patient information sheet were written in neutral language, and the diagnostic items were nested in a larger “challenges in care” questionnaire so the sample would not over-recruit people already focused on delay.

What is the difference between a psychiatric and a psychosomatic misdiagnosis here?

Psychiatric misdiagnosis meant the autoimmune symptoms had been attributed to a mental-health cause (43.3% of women, 32.7% of men). Psychosomatic misdiagnosis was asked as a separate item: physical symptoms said to be caused or worsened by psychological factors (33.9% of women, 21.5% of men). A person could report both, which is why the two percentages should not be added into a single “told it was mental” total.

Were men more likely to be given the wrong physical diagnosis?

More men than women reported being misdiagnosed with a different physical disease, 47.6% against 43.5%, but that difference was not statistically significant (p = 0.131). The sex gap that remained after adjustment was the psychiatric and psychosomatic gap, not a higher rate of every kind of error in women.

Who funded the Cambridge and East Anglia study?

The 2026 eClinicalMedicine paper lists The Lupus Trust, Vasculitis UK, Sjögren’s UK, Lupus UK, and SRUK. The related March 2025 Rheumatology paper on the lasting effects of these misdiagnoses was funded by LUPUS UK and The Lupus Trust.

Disclaimer: This article is news reporting and analysis of published research. It is for information only and is not medical advice, a diagnosis, or a treatment plan for any autoimmune, psychiatric, or other condition. Readers who are worried about symptoms, an existing diagnosis, or a past clinical conversation should speak with a qualified physician, rheumatologist, or licensed mental-health professional who can review their own history. Figures, odds ratios, and study details reflect the papers and university notes cited here as of October 12, 2026, and later work may revise them.