Women With Autoimmune Disease Face Longer Waits and More Psychiatric Misdiagnoses

For millions of people living with autoimmune diseases, the road to a diagnosis can stretch over years of unexplained fatigue, pain, and shifting symptoms that defy easy categorisation. A new international study of more than 6,600 patients now offers the clearest picture yet of how that road differs between the sexes, and the findings are stark. Women with autoimmune conditions report significantly longer diagnostic delays, more visits to clinicians before receiving an answer, and far higher rates of being told their physical symptoms were psychiatric or psychosomatic in origin. The research, published in eClinicalMedicine, analysed patient-reported diagnostic experiences across a broad spectrum of autoimmune diseases, from lupus and Sjögren’s disease to rheumatoid arthritis and autoimmune thyroid disease, and found that the disparities persisted even after accounting for age, disease type, geography, and household financial circumstances.

The study, led by Melanie Sloan of the University of Cambridge together with colleagues including David D’Cruz and Arvind Kaul, surveyed 6,607 adults with confirmed autoimmune or inflammatory rheumatic diseases between December 2024 and March 2025. The overwhelming majority of respondents, 91.2 percent, were female, a proportion that mirrors the epidemiology of autoimmunity itself: women account for roughly 70 to 80 percent of autoimmune disease cases worldwide, a skew attributed to a combination of sex hormones, X-chromosome-linked genetic factors, and aberrant immune responses. Participants were recruited through social media, patient charities, and community groups across the United Kingdom, North America, Europe, Africa, Asia, and Oceania, with the survey translated into five languages and targeted efforts made to reach under-served populations.

The headline numbers are striking. Among men, the most frequently reported interval from first symptoms to diagnosis was less than three months, whereas among women it was one to two years. Nearly half of male respondents, 49.7 percent, said they were diagnosed within a year of symptom onset, compared with just 39.7 percent of women. At the other end of the spectrum, 31.8 percent of women reported waiting four years or longer for a diagnosis, against 25.5 percent of men. The consultation burden told a similar story: 26.2 percent of women reported seeing a clinician eleven or more times before their autoimmune disease was identified, compared with 18.4 percent of men. Bayesian ordinal regression models, which estimate the probability of falling into each delay category while quantifying uncertainty, confirmed that these differences were not statistical noise.

The most provocative findings concern the kinds of wrong turns patients report along the way. Significantly more women than men said their autoimmune symptoms had been misattributed to a mental health condition, 43.3 percent versus 32.7 percent, or to psychosomatic causes, meaning physical symptoms attributed to psychological factors, at 33.9 percent versus 21.5 percent. After adjusting for age, disease group, continent, and household financial situation, female sex remained associated with roughly 46 percent higher odds of reporting a mental health misdiagnosis and 74 percent higher odds of reporting a psychosomatic one. Notably, there was no significant sex difference in the proportion reporting misdiagnosis with an alternative physical disease, suggesting that the disparity is specific to psychiatric and psychosomatic attribution rather than a general diagnostic disadvantage.

The researchers were careful to frame these as perceived misdiagnoses, reflecting the patient’s side of the clinical encounter. In some cases, an early diagnosis of anxiety or depression may represent a reasonable differential diagnosis during a phase when the disease has not yet declared itself, or a genuine co-existing condition. Yet the sheer scale of the reported figures, with high rates of perceived misdiagnosis in both sexes, points to something systemic. Many autoimmune diseases begin with non-specific, relapsing-remitting symptoms such as fatigue, low mood, poor sleep, and diffuse pain, which are common in the general population and can plausibly be explained by psychological or hormonal causes. Without definitive biomarkers, clinicians face genuine diagnostic uncertainty, and the temptation to reach for a psychological explanation can be strong, particularly early in the disease course.

The variation across diseases was itself revealing. Autoimmune encephalitis and undifferentiated connective tissue disease, or UCTD, showed the highest reported rates of both mental health and psychosomatic misdiagnoses, exceeding 50 percent, while polymyalgia rheumatica, type 1 diabetes, and rheumatoid arthritis showed the lowest, below 25 percent. The pattern is consistent with a simple principle: diseases with clearer biomarkers or externally visible manifestations are harder to misattribute to the mind. Autoimmune encephalitis, which can present with florid psychiatric symptoms, and UCTD, which by definition lacks a definitive signature, sit at the opposite extreme. Misdiagnosis with another physical disease was most common in inflammatory bowel disease and vasculitis, both above 57 percent, and lowest in type 1 diabetes.

Why should women bear the brunt of these diagnostic difficulties? The authors point to a convergence of biological and systemic factors. On the biological side, hormonal fluctuations and the overlap between menopausal symptoms, such as musculoskeletal pain, fatigue, mood disturbance, and sleep disruption, and the early features of many autoimmune diseases can complicate assessment. On the systemic side, historical biases in medicine have long positioned women as less credible, more emotional reporters of their own symptoms, a stereotype documented across chronic pain and medically unexplained symptom research. Women’s health has also historically received less research funding, and pre-clinical research has disproportionately relied on male models. The authors raise a modern twist: artificial intelligence diagnostic tools trained on sex-biased data, and digital patient twins that under-represent women and minoritised ethnicities, risk perpetuating these disparities into the algorithmic era.

The consequences of delayed and misattributed diagnosis are not merely academic. Prolonged untreated inflammation increases the risk of irreversible organ damage in many autoimmune diseases and is associated with greater morbidity, reduced quality of life, and premature mortality. Previous work by the same team documented lasting psychological fallout from psychiatric and psychosomatic misdiagnoses, including eroded trust in clinicians and reluctance to report new symptoms or seek care, effects that can themselves compound diagnostic delay. There is also a subtler risk of diagnostic overshadowing, in which a pre-existing label such as anxiety leads clinicians to interpret subsequent physical symptoms through a psychological lens. The study found that lower household financial status was independently associated with higher odds of both mental health and psychosomatic misdiagnosis, adding socioeconomic inequity to the picture.

The study has limitations the authors acknowledge candidly. Most participants were from the United Kingdom and of white ethnic background, the survey may have attracted people with particularly negative experiences, and retrospective self-report is subject to recall bias. The researchers could not distinguish biological sex from gender-related factors, and some diseases had too few male participants for robust comparison. Yet recall bias is unlikely to differ systematically by sex, lending weight to the observed disparities. The patient-reported approach also captures elements of the diagnostic journey, such as symptom onset and interim explanations, that medical records routinely miss; studies relying solely on records may underestimate both the duration and the complexity of diagnostic pathways.

The authors argue that the findings should reshape clinical practice. Autoimmune disease should be considered early in patients presenting with multiple, multi-system, or medically unexplained symptoms, and sex biases in medicine should be actively examined and mitigated. Continuity of care with the same clinician, explicit validation of patients’ symptoms, clear safety-netting in primary care, and a willingness to revisit diagnostic decisions as new information emerges have all been reported as key to building trust and shortening diagnostic journeys. Policy initiatives such as Jess’ Rule, which urges general practitioners to rethink a diagnosis after three failed consultations, may help. Above all, the study makes the case that patients’ own accounts of their symptoms and their diagnostic experiences are not soft data but essential evidence, and that incorporating them into clinical assessment could spare thousands of women, and men, years of uncertainty, misattribution, and preventable harm.

Subject of Research: Sex differences in diagnostic delays and perceived misdiagnoses among patients with autoimmune diseases

Article Title: Sex and disease differences in patients’ diagnostic experiences in autoimmune diseases: an international cross-sectional study

Article References: Sloan, M., Taylor, S., Cox, B., Naidu, K. K., Modi, R., Diment, W., Tayabali, S., Piper, M., Brimicombe, J., Kaul, A., & D’Cruz, D. (2026). Sex and disease differences in patients’ diagnostic experiences in autoimmune diseases: an international cross-sectional study. eClinicalMedicine, Article 104259. https://doi.org/10.1016/j.eclinm.2026.104259

Image Credits: AI Generated

DOI: 10.1016/j.eclinm.2026.104259

Keywords: autoimmune disease, diagnostic delay, misdiagnosis, sex differences, psychosomatic, mental health, lupus, patient-reported outcomes, healthcare inequality, primary care, eClinicalMedicine, women's health