Autoimmune Disease in Women: Why So Many Are Told It’s All in Their Head First

Fans of House will remember the running joke: whenever a baffling case came in, someone suggested lupus and someone else insisted it was never lupus. A new study suggests that in real life the punchline often runs the other way. For many women with autoimmune diseases, the first answer they hear is not lupus or multiple sclerosis or rheumatoid arthritis. It is stress, anxiety or depression.

The research, published on October 12 in eClinicalMedicine, a journal from The Lancet family, asked 6,607 people living with autoimmune diseases about the road to their diagnosis. The results describe a gap between women and men that the researchers call stark. If you have ever left an appointment with a leaflet about relaxation techniques and the same symptoms you walked in with, the numbers may feel uncomfortably familiar.

What the autoimmune misdiagnosis study found

The study was led by Dr Melanie Sloan of the University of Cambridge and Norwich Medical School at the University of East Anglia. It was co-designed with patients, charities and clinicians. Participants reported how long it took from their first symptoms to a correct diagnosis, how many healthcare consultations they had along the way and which diagnoses they received before the right one.

Among women, 43 percent said their symptoms had been attributed to a psychiatric cause before their autoimmune diagnosis, compared with 33 percent of men, News-Medical reports. For psychosomatic explanations, where physical symptoms are put down to psychological factors, the figures were 34 percent of women and 22 percent of men. After the researchers adjusted for age, disease group, continent and household finances, women were almost 50 percent more likely to report a psychiatric misdiagnosis and nearly 75 percent more likely to report a psychosomatic one.

The waiting times diverge too. Most men reported getting a diagnosis within three months of their first symptoms, while most women reported a wait of one to two years. Nearly a third of women waited four years or longer, according to Euronews. Women also reported more medical appointments before getting answers.

One detail matters for anyone tempted to read this as “doctors are simply careless”. Men and women reported similar rates of being misdiagnosed with a different physical illness, 48 percent of men and 44 percent of women. The gap is specifically about symptoms being filed under the mind rather than the body. Conditions with clearer diagnostic markers, such as type 1 diabetes and rheumatoid arthritis, were less often linked to psychiatric or psychosomatic misdiagnosis, mindbodygreen notes in its summary of the paper.

Why the mind gets the blame first

Autoimmune diseases are not rare. What stands out is who carries most of the burden. Women account for roughly 70 to 80 percent of autoimmune cases worldwide, Euronews reports, with autoimmune thyroid disease, systemic lupus and multiple sclerosis among the common examples. Many of these conditions begin with symptoms that are maddeningly vague: fatigue, pain, poor sleep, low mood. Those are exactly the symptoms that are easy to attribute to a busy life.

History has not helped. Medicine spent centuries using the word hysteria, from the Greek word for womb, as a catch-all for symptoms in women that doctors could not explain. Psychiatry’s diagnostic manual dropped hysteria as a category in 1980, yet the reflex it represented has been slower to retire. Hollywood even gave us a term for the experience: the 1944 thriller Gaslight, in which Ingrid Bergman’s character is manipulated into doubting her own perceptions, is the reason “gaslighting” is in your vocabulary.

The study itself cannot say why the gap exists. The authors are careful about this. Co-author Shaista Tayabali told Euronews that historical gender biases remain part of the diagnostic journey and that women “still often have a harder time having our symptoms believed”. Euronews also mentions limited research on women’s health and sex-biased data in machine learning models as possible contributors. Those are plausible explanations, not findings of this particular paper.

A crucial nuance: the mind and the body are not rivals

It would be easy to turn this into a story of heroes and villains. The experts quoted in coverage of the study push back on that. Professor David D’Cruz, a consultant rheumatologist at Guy’s Hospital in London, stressed that this is “not about saying that a psychiatric diagnosis is never correct”. He also pointed out that psychiatric symptoms can genuinely be part of autoimmune disease, especially lupus, which can affect the brain. Depression and an autoimmune condition can exist side by side. The problem arises when the first explanation becomes the only one.

Sloan put it in one line: “psychological or mental health explanations can be given too soon”. The researchers recommend that clinicians consider autoimmune disease before settling on a psychiatric or psychosomatic diagnosis, openly acknowledge uncertainty, tell patients when to come back for further assessment and revisit earlier diagnoses when new symptoms appear. Continuity of care, meaning seeing the same doctor who knows your history, comes up repeatedly.

What the study cannot tell you

This is an exploratory survey and it has real limits. Participants recalled experiences that sometimes happened years earlier, so memory may colour the details. Most respondents were white women living in the UK, which limits how far the results travel. People with frustrating diagnostic journeys may also have been more motivated to take part. The survey did not collect gender identity, so it cannot separate biological sex from how people are treated because of their gender. None of that cancels the pattern, but it does mean the exact percentages should be read as signals rather than precise measurements.

For you as a patient, the practical takeaway is modest and sensible. Persistent symptoms deserve to be taken seriously, including by you. Keeping a simple timeline of when symptoms started and how they change can make a consultation more productive. It is also reasonable to ask what else could explain what you are experiencing or when a diagnosis should be reviewed. None of this replaces a doctor’s assessment. It simply gives the conversation more evidence to work with.

The next step for the researchers is to understand the experiences behind the numbers and to find ways of shortening diagnostic delays. If that work succeeds, the old House joke might finally get a new ending: not “it’s never lupus” and not “it’s all in your head”, but “let’s keep looking”.

This article is for general information only and does not replace professional medical advice, diagnosis or treatment. If you have persistent symptoms, please speak to a doctor.