The Long Road to Answers for Women With Autoimmune Conditions

For millions of Americans, the journey to receiving an autoimmune diagnosis is a prolonged and deeply frustrating ordeal. Patients are often left trying to stitch together a web of seemingly unrelated, transient symptoms. Veena Joy, Ph.D., M.Sc., the U.S. lead for strategic partnerships in Allergy and Autoimmunity at Thermo Fisher Scientific, notes that this diagnostic labyrinth is disproportionately complex for women. Despite accounting for roughly 4 out of 5 individuals diagnosed with an autoimmune disease, women routinely see their early symptoms dismissed or misattributed to stress, hormonal fluctuations, aging or lifestyle factors.

The consequences of these delays go far beyond emotional exhaustion. According to Joy, it takes an average of four to five years and visits to multiple clinicians before a patient receives definitive answers. During this multiyear gap, unchecked inflammation can progress quietly, leading to lasting tissue, joint or organ damage. This reality underscores a critical need for enhanced education in frontline primary care, better clinical recognition of systemic patterns over time and streamlined paths to appropriate diagnostic testing.

Many women spend years searching for answers before receiving an autoimmune diagnosis. Why are these conditions so often missed or mistaken for something else?

Veena Joy, Ph.D., M.Sc.: Millions of Americans are living with autoimmune diseases, but getting to a diagnosis can still be a long and frustrating journey, especially for women.

Part of the challenge is that autoimmunity is not one disease. It includes more than 100 different conditions, many of which share symptoms like fatigue, joint pain, stiffness, brain fog, rashes, digestive issues or unexplained pain. These symptoms can come and go, overlap with other conditions, and be difficult to connect to one underlying cause.

For women, that journey can be even more complicated because symptoms are sometimes attributed to stress, hormones, aging or lifestyle before autoimmune disease is fully considered. That is especially concerning given that approximately 4 out of 5 people diagnosed with an autoimmune disease are women.

There are also real system-level barriers. Many patients start in primary care with symptoms that are hard to pin down, and diagnosis often requires recognizing patterns over time, ordering the right tests and knowing when to refer to a specialist. Limited access to specialists, including rheumatologists, can add even more time.

The result is that many women see multiple clinicians over several years before receiving answers. Some estimates suggest it can take four to five years to receive an autoimmune diagnosis. That delay is not only emotionally exhausting; in some diseases, it can allow inflammation to progress and cause lasting joint, tissue or organ damage. That is why earlier recognition, better education in frontline care and timely access to appropriate testing and referral are so important.

Symptoms like fatigue, pain, brain fog and digestive issues can overlap with many other conditions. What should women pay attention to when deciding it’s time to push for further testing or a specialist referral?

VJ: I would encourage women to pay attention to patterns, not just individual symptoms, and to trust themselves when something feels persistent or out of the ordinary. Fatigue, pain, brain fog or digestive issues can be easy to dismiss, especially when they come and go. But when symptoms are recurring, worsening, or starting to interfere with daily life, particularly if they occur alongside joint stiffness, swelling, rashes, unexplained fevers, hair loss, numbness or recurring gastrointestinal issues, it is worth having a deeper conversation with a health care provider.

Self-advocacy can make a real difference in that conversation. Coming prepared with a clear symptom history (when symptoms started, how often they occur, whether they come in flares, what seems to trigger them and whether they are worse at certain times of day) can help a clinician see the full pattern rather than treating each symptom in isolation.

Women should also feel comfortable asking direct questions, such as: “Could these symptoms be connected?” “Does an autoimmune workup make sense?” or “Would a specialist referral be appropriate?” Asking those questions is not being difficult; it is being proactive about your health.

It is also important to know that autoimmune testing is not always straightforward. Some conditions may not show up clearly on routine bloodwork, and a negative test does not always mean nothing is wrong. At the same time, antibody tests can sometimes be positive in people without autoimmune disease, so results need to be interpreted alongside symptoms, exam findings and clinical judgment.

The key message is this: not every symptom is autoimmune, but if symptoms are persistent, unexplained or affecting quality of life, it is appropriate to keep asking questions, seek clarity and make sure the full pattern is being evaluated.

What are you hearing from women about the real-world impact these delayed diagnoses can have on work, finances and mental health?

VJ: What I hear most often is that the impact goes far beyond the physical symptoms. Many women are trying to keep up at work, care for their families and manage daily responsibilities while living with symptoms they cannot yet explain. That can be incredibly isolating.

Without a diagnosis, there may be no clear treatment plan, no formal workplace accommodations and no simple way to explain what is happening to an employer, a colleague or even family and friends. Over time, the financial burden can also build from repeated appointments, testing, specialist visits, missed work or reduced productivity.

The mental health impact is just as important. When someone is told repeatedly that their symptoms may be stress, hormones, aging or lifestyle, it can make them start to question themselves. Many women describe feeling dismissed, frustrated or exhausted by the process of having to keep advocating for answers.

That is why closing the diagnostic gap matters so much. Earlier recognition and more timely access to the right testing and referrals can help women get clarity sooner, begin appropriate care and feel validated in what they are experiencing.

How are newer advances in laboratory testing helping improve the accuracy and speed of autoimmune disease diagnosis, and what should patients know about advocating for appropriate testing?

VJ: Laboratory testing has become much more automated and sophisticated, and that is allowing more laboratories to bring on critical testing to support clinicians, which in turn helps clinicians look for autoimmune disease with greater precision. Today, testing can often go beyond broad screening and help identify more specific autoantibodies that may help differentiate one condition versus another. That can be especially helpful because many autoimmune diseases have overlapping symptoms and can look very similar early on.

The goal is not simply to order more tests (or fewer tests), but to order the right tests for the right patient at the right time. Autoimmune testing is most useful when it is guided by a person’s symptoms, medical history, physical exam and family history. A positive result does not always mean someone has an autoimmune disease, and a negative result does not always rule one out, so interpretation really matters.

For patients, advocacy starts with asking clear questions: “What are we testing for?” “What would this result rule in or rule out?” “If the test is negative but my symptoms continue, what is the next step?” Those are very reasonable questions.

I also encourage patients to share the full picture of what they are experiencing; not just the most obvious symptom, but when symptoms started, whether they come in flares and how they are affecting daily life. The combination of a clear symptom story and appropriate testing can help shorten the path to answers.

What’s the most important message you want women to hear about trusting their symptoms, seeking answers and advocating for their long-term health?

VJ: The most important message I want women to hear is: trust yourself. If something feels persistent, unexplained or different from your normal, it is worth paying attention to, and you deserve to be taken seriously.

For too long, many women have had symptoms minimized or attributed to stress, hormones or lifestyle before a deeper medical explanation was considered. But that is changing. There is growing awareness of the need to better understand conditions that disproportionately affect women, including autoimmune diseases, and to support earlier, more precise diagnosis.

I want women to feel empowered to ask questions, share the full picture of what they are experiencing and keep seeking answers when something does not feel right. Advocacy does not mean assuming the worst; it means partnering with your health care provider to make sure your concerns are heard, your symptoms are evaluated thoughtfully and the right next steps are considered.

My hope is that women feel confident in their voice, supported in their care and encouraged to prioritize their long-term health. Your symptoms are real, your experiences matter and you deserve clarity, care and answers.