You're Not Imagining It
The devastating reality of autoimmune misdiagnosis
You wake up exhausted despite sleeping ten hours. Your joints ache with a deep, persistent pain that no amount of rest seems to ease. Brain fog makes simple tasks feel impossible. You've canceled plans again because getting dressed feels like climbing a mountain. And when you finally gather the strength to see your doctor, hoping for answers, you hear those crushing words: "It's probably just stress."
If this sounds familiar, you're not alone. You're part of a silent epidemic affecting millions of people—primarily women—whose very real autoimmune symptoms are being dismissed as psychological problems. The pain isn't in your head. The exhaustion isn't laziness. The symptoms aren't exaggerated. And the dismissal you're experiencing has a name: medical gaslighting.
According to a groundbreaking 2025 study from the University of Cambridge involving over 3,000 participants, when autoimmune diseases are misdiagnosed as psychiatric or psychosomatic conditions, the impact is profound and lasting. More than 80% of patients reported that the misdiagnosis damaged their self-worth, and 72% said it still upset them—often decades later.
"One doctor told me I was making myself feel pain and I still can't forget those words. Telling me I'm doing it to myself has made me very anxious and depressed."
— Patient with multiple autoimmune diseases, University of Cambridge Study, 2025
This article explores why this happens, what the science tells us about the complex relationship between stress and autoimmune disease, and most importantly, what you can do to advocate for yourself and get the care you deserve.
The Numbers Tell a Story
Understanding the scope of autoimmune misdiagnosis
The Diagnostic Dilemma
Why autoimmune diseases are so often misdiagnosed
Autoimmune diseases are notoriously difficult to diagnose, and there are several reasons why your symptoms might be attributed to stress or anxiety instead of an underlying autoimmune condition.
The Symptom Overlap Problem
Many autoimmune symptoms mirror those of stress, anxiety, and depression. Fatigue, difficulty concentrating, sleep disturbances, muscle aches, and digestive issues can all be caused by either psychological stress or autoimmune disease. This overlap creates a diagnostic blind spot where doctors may reach for the most obvious explanation—stress—without investigating further.
According to Dr. Melanie Sloan's research published in The Conversation, some medical literature suggests that a long list of symptoms is a "red flag" for psychosomatic illness. However, this generalization dangerously fails to account for the fact that a long list of seemingly unconnected symptoms is also a hallmark of many autoimmune diseases.
Common Autoimmune Symptoms Often Dismissed as Stress
- Persistent, unexplained fatigue that doesn't improve with rest
- Joint pain and stiffness, especially in the morning
- Muscle weakness and aches
- Brain fog and difficulty concentrating
- Digestive issues (bloating, pain, irregular bowel movements)
- Skin rashes or changes
- Low-grade fever
- Numbness or tingling in hands and feet
- Hair loss
- Sensitivity to cold or heat
The Invisibility Factor
Many autoimmune symptoms are invisible. You can't see fatigue. You can't measure brain fog. Depression and pain don't show up on a simple blood test. This invisibility makes it easier for healthcare providers to doubt the severity or even the existence of your symptoms.
As one patient described in the Cambridge study: "It has affected my mental health very negatively and I do think it's affected me in my like sense of self. It's not good for anyone at any age but as a teenage girl being told you don't know your own feelings is absolutely no way to shape a human being."
The Testing Challenge
Autoimmune diseases can be difficult to detect through standard laboratory tests, especially in the early stages. Many autoimmune markers fluctuate, and a negative test doesn't necessarily mean you don't have an autoimmune condition. Some autoimmune diseases don't have specific diagnostic tests at all, relying instead on clinical presentation and ruling out other conditions.
This diagnostic uncertainty can lead doctors to default to a stress diagnosis, particularly when they're working within the constraints of brief appointment times and insurance-driven treatment protocols.
The Science Behind the Confusion
Understanding the bidirectional relationship between stress and autoimmunity
Here's where things get complicated: stress and autoimmune disease aren't mutually exclusive. In fact, they have a bidirectional relationship—each can influence and exacerbate the other. This scientific reality makes the diagnostic picture even murkier and, unfortunately, gives some healthcare providers an easy out when faced with complex symptoms.
The Bidirectional Connection
A comprehensive meta-analysis published in BMJ Mental Health in 2024 examined 47 studies involving over 40.77 million participants. The findings were clear: there is a bidirectional association between autoimmune diseases and depression.
People with autoimmune diseases have a significantly higher risk of developing depression (relative risk of 1.85), with the risk even higher in those over 45 years old (relative risk of 2.30). Conversely, people with depression have an increased risk of developing autoimmune diseases (relative risk of 1.84).
But here's the critical distinction: having depression or stress doesn't mean your physical symptoms are "all in your head." It means that chronic illness and psychological distress often coexist, each influencing the other through complex biological pathways.
The Inflammatory Connection
Both stress and autoimmune diseases share a common pathway: inflammation. When you're under chronic stress, your body produces inflammatory molecules called cytokines. These same inflammatory markers are elevated in autoimmune conditions. This overlap in inflammatory pathways is one reason why stress can trigger or worsen autoimmune flares, and why autoimmune disease can contribute to mood disorders.
According to research from the NIH published in September 2025 on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), people with immune-related fatigue conditions show signs of overactive immune responses and heightened inflammation. The study found higher levels of inflammatory molecules in blood samples from people with ME/CFS compared to healthy controls, suggesting a hypersensitive immune system.
"While what gives rise to ME/CFS remains obscure, understanding the ways it disrupts the body's various biological processes on the molecular level is revealing biomarkers for specific ME/CFS subtypes that may inform clinical research and lead to targeted interventions."
— Dr. W. Ian Lipkin, Columbia University Mailman School of Public Health, NIH Research Matters, 2025
The HPA Axis and Immune Dysregulation
Chronic stress affects the hypothalamic-pituitary-adrenal (HPA) axis, which regulates your body's stress response and immune function. When this system is dysregulated—whether from chronic psychological stress or from an autoimmune disease—it can lead to immune system dysfunction, increased inflammation, and a cascade of symptoms that affect both body and mind.
This doesn't mean stress causes autoimmune disease. Rather, it means that stress can be a trigger or exacerbating factor in someone who is already genetically predisposed to autoimmune conditions. The relationship is complex, multifactorial, and far from the simple "it's just stress" explanation many patients receive.
Why Women Are Disproportionately Affected
The gender disparity in autoimmune disease is striking. According to Stanford Medicine research published in February 2024, somewhere between 24 and 50 million Americans have an autoimmune disease, and as many as 4 out of 5 of those people are women.
For lupus, the female-to-male ratio is 9 to 1. For Sjögren's syndrome, it's 19 to 1. This isn't coincidental—it's biological. The Stanford study identified a key factor: a molecule called Xist, which is produced only in female cells as part of X-chromosome inactivation. This molecule creates RNA-protein-DNA complexes that can trigger autoantibodies targeting a woman's own tissues.
As Dr. Howard Chang, the study's senior author, noted: "Every cell in a woman's body produces Xist. But for several decades, we've used a male cell line as the standard of reference. That male cell line produced no Xist and no Xist/protein/DNA complexes, nor have other cells used since for the test. So, all of a female patient's anti-Xist-complex antibodies—a huge source of women's autoimmune susceptibility—go unseen."
This biological reality, combined with well-documented gender bias in medicine, means that women's symptoms are more likely to be dismissed, minimized, or attributed to psychological causes.
Taking Control: Patient Advocacy Strategies
How to navigate the healthcare system and get the care you deserve
If you're experiencing symptoms that your doctor attributes to stress, but you suspect something more is going on, you don't have to accept that diagnosis without question. Here are evidence-based strategies for advocating for yourself in the medical system.
1. Document Everything
Keep a detailed symptom journal. According to patient advocacy resources from Phoenix Helix, a symptom journal is "a simple but powerful tool for self-awareness." Record:
- What symptoms you're experiencing and their severity (use a 1-10 scale)
- When symptoms occur (time of day, day of week)
- What makes symptoms better or worse
- How symptoms affect your daily activities
- Any patterns you notice (flares after certain foods, activities, or stressors)
This documentation provides concrete data that's harder to dismiss than verbal descriptions of symptoms. Apps like Symple can help you track symptoms digitally.
2. Bring Support to Important Appointments
Medical anxiety is real, especially if you've had negative experiences with doctors in the past. Bringing a trusted friend or family member to important appointments can help in several ways:
- They provide emotional support and help you feel more confident
- They can take notes while you focus on communicating with the doctor
- They can help remember information shared during the appointment
- They can advocate for you if needed
3. Prepare a Concise Summary
Doctors have limited time, so make every minute count. Bring a one-page summary that includes:
- Your top 3 concerns or symptoms
- When symptoms started
- What makes them better or worse
- Tests and treatments already tried
- Specific questions you want answered
If you have visible symptoms during flares (rashes, swelling, etc.), take photos and bring them to your appointment, as the flare may have passed by the time you see the doctor.
4. Ask for What You Need
Don't be afraid to request specific tests, referrals, or treatments. If you think something might help you, ask for it. According to the Phoenix Helix advocacy guide, "Part of being an empowered patient is being educated about our own needs."
If your doctor refuses a test or referral you feel you need, ask them to document the refusal in your medical chart. Sometimes this request alone is enough to change their mind. If not, seek a second opinion.
5. Know When to Seek a Second (or Third, or Fourth) Opinion
Given that it takes an average of four doctors and four years to get an autoimmune diagnosis, persistence is essential. You have the right to seek multiple opinions. Consider changing doctors if:
- Your symptoms are dismissed without investigation
- You're told "it's all in your head" without appropriate testing
- Your doctor refuses reasonable requests for tests or referrals
- You don't feel heard or respected
- Your quality of life continues to decline without intervention
Red Flags: When to Seek a New Doctor
- Your concerns are consistently dismissed or minimized
- You're told your symptoms are "just stress" without proper evaluation
- Your doctor becomes defensive when you ask questions
- You're made to feel like you're wasting their time
- Your doctor refuses to order tests or provide referrals without explanation
- You leave appointments feeling unheard, invalidated, or gaslit
6. Consider Functional Medicine
While conventional medicine excels at acute care and crisis management, it often falls short in addressing complex chronic conditions like autoimmune disease. Functional medicine takes a different approach, focusing on identifying and addressing root causes rather than just managing symptoms.
Functional medicine practitioners typically:
- Spend more time with patients (often 60-90 minutes for initial consultations)
- Order comprehensive testing to identify underlying imbalances
- Consider the whole person—genetics, environment, lifestyle, and diet
- Use an integrative approach combining conventional and complementary therapies
- Focus on prevention and optimization, not just disease management
While functional medicine practitioners may not be covered by insurance, many patients find the investment worthwhile for the comprehensive care and attention they receive.
7. Utilize Patient Advocacy Organizations
You don't have to navigate this alone. Organizations like The Patient Advocate Foundation provide free case management services and financial aid to Americans with chronic illness. They can help you:
- Understand your insurance coverage
- Access the care you need
- Appeal insurance denials
- Find low-cost healthcare options if you're uninsured
- Apply for co-pay relief and financial assistance programs
8. Practice Self-Compassion
Advocating for yourself in a medical system that often dismisses your concerns is exhausting. It's okay to feel frustrated, angry, or overwhelmed. These feelings are valid. Remember that needing to advocate for yourself doesn't mean you're difficult—it means the system is failing you.
As the Cambridge study showed, the psychological impact of medical dismissal can last for decades. Be gentle with yourself as you navigate this process. Seek support from friends, family, online communities, or a therapist who understands chronic illness.
Moving Forward: Hope and Healing
You deserve to be heard, believed, and helped
If you're reading this and recognizing your own experience in these words, please know: you are not alone, you are not imagining your symptoms, and you deserve proper medical care.
The journey to diagnosis and effective treatment can be long and frustrating, but it's not hopeless. Every year, our understanding of autoimmune diseases improves. New diagnostic tools are being developed. More healthcare providers are recognizing the limitations of the "it's just stress" explanation.
Building Your Healthcare Team
Effective autoimmune care often requires a team approach. Your team might include:
- A primary care physician who takes your concerns seriously
- A rheumatologist or other autoimmune specialist
- A functional medicine practitioner
- A mental health professional who understands chronic illness
- Physical therapists, nutritionists, or other specialists as needed
Don't settle for a doctor who dismisses you. Keep searching until you find providers who see you as a partner in your care.
Self-Care Isn't Selfish
While you're pursuing proper diagnosis and treatment, don't neglect self-care. This doesn't mean your symptoms are "just stress," but it does mean that supporting your body's healing processes can help manage symptoms and improve quality of life.
Evidence-based self-care strategies include:
- Anti-inflammatory nutrition (reducing processed foods, sugar, and potential trigger foods)
- Gentle movement appropriate to your energy levels
- Stress management techniques (meditation, deep breathing, yoga)
- Prioritizing sleep and rest
- Building a support network
- Setting boundaries to protect your energy
Community and Connection
Finding others who understand your experience can be incredibly validating. Online and in-person support groups for autoimmune disease can provide:
- Emotional support from people who "get it"
- Practical tips for managing symptoms
- Recommendations for healthcare providers
- Advocacy and awareness opportunities
- Reduced feelings of isolation
Your Voice Matters
Every person who speaks up about medical dismissal helps change the system. By advocating for yourself, you're not just helping yourself—you're paving the way for others who will come after you.
Share your story. Support others. Demand better care. Together, we can create a healthcare system that truly listens.
Key Takeaways
- Your symptoms are real, even if tests don't immediately show abnormalities
- Stress and autoimmune disease can coexist—one doesn't negate the other
- Medical dismissal has lasting psychological impacts that are well-documented
- You have the right to seek multiple opinions and advocate for comprehensive testing
- Documentation, preparation, and persistence are your most powerful tools
- Patient advocacy organizations can provide crucial support and resources
- Building a healthcare team that respects you is essential
- Self-care and community support complement medical treatment
Additional Resources
- Autoimmune Association - Education, advocacy, and support
- Patient Advocate Foundation - Case management and financial assistance
- Phoenix Helix - Autoimmune wellness resources and podcast
- Autoimmune Institute - Research and patient education
- Lupus Foundation of America - Lupus-specific resources
- American College of Rheumatology Patient Resources
References & Sources
All claims in this article are backed by authoritative sources
- Sloan, M., et al. (2025). "I still can't forget those words": mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses. Rheumatology. University of Cambridge. https://www.news-medical.net/news/20250304/Misdiagnosis-of-autoimmune-diseases-leads-to-long-term-patient-impact.aspx
- Sloan, M. (2025). 'All in your head': when doctors misdiagnose autoimmune disease as psychosomatic. The Conversation. https://theconversation.com/all-in-your-head-when-doctors-misdiagnose-autoimmune-disease-as-psychosomatic-250953
- Li, Y., et al. (2024). Elucidating the bidirectional association between autoimmune diseases and depression: a systematic review and meta-analysis. BMJ Mental Health. https://pmc.ncbi.nlm.nih.gov/articles/PMC11647340/
- National Institutes of Health. (2025). Overactive immune responses in ME/CFS. NIH Research Matters. https://www.nih.gov/news-events/nih-research-matters/overactive-immune-responses-mecfs
- Chang, H., et al. (2024). Stanford Medicine-led study shows why women are at greater risk of autoimmune disease. Stanford Medicine News. https://med.stanford.edu/news/all-news/2024/02/women-autoimmune.html
- Autoimmune Association. Diagnosis Tips. https://autoimmune.org/resource-center/diagnosis-tips/
- Laird, E. (2023). Autoimmune Patient Self-Advocacy Guide. Phoenix Helix. https://www.phoenixhelix.com/autoimmune-patient-self-advocacy-guide/
- Patient Advocate Foundation. https://www.patientadvocate.org/