When Misdiagnosis Leaves a Lasting Mark: Why it’s so important for patients with autoimmune conditions to be believed

When Symptoms Are Misunderstood

If you’ve ever been told “it’s all in your head” — only to later learn you have a serious autoimmune condition like lupus or Sjögren’s — you’re not alone.

A recent study in the journal Rheumatology found that many people with autoimmune diseases like lupus or Sjögren’s were first misdiagnosed with mental health conditions. These misdiagnoses caused lasting emotional harm. Over 80% of patients in the study said such misdiagnoses harmed their self-worth, and 72% said it still upsets them, even years later [1].

 “One doctor told me I was making myself feel pain and I still can’t forget those words.” – patient 724 [1]

Why Misdiagnosis Happens

There are several reasons why autoimmune diseases are often misdiagnosed, especially in their early stages. First, many symptoms are non-specific — fatigue, joint pain, headaches, and brain fog are common across multiple conditions, including psychiatric ones. Second, diagnostic tests may be inconclusive, particularly early on. Finally, bias in healthcare also plays a role. Young people, women, and those with many unclear symptoms are more likely to be told it's just stress or anxiety [2].

In a 2020 study, 76% of patients with systemic autoimmune rheumatic diseases (SARDs) said they were misdiagnosed at least once before receiving the correct diagnosis [2]. Similarly, the Lupus Foundation of America reports that 63% of individuals with lupus are misdiagnosed, and over half see four or more healthcare professionals before being properly diagnosed [3]. These delays are not only frustrating, but may also worsen disease outcomes and increase psychological distress.

The Long-Term Impact of Being Dismissed

When patients are told their symptoms are imagined or exaggerated, it doesn’t just delay care — it changes how they feel about themselves and the medical system.

In the study by Sloan et al., patients who were misdiagnosed with psychiatric or psychosomatic labels were significantly more likely to:

• Distrust future clinicians 

• Avoid seeking medical care, even for serious symptoms

• Underreport how bad they were feeling

  
  

Many also experienced worsening depression and anxiety, sometimes triggered directly by the misdiagnosis [4].

The Emotional Toll

Being dismissed or told your symptoms are “all in your head” can deeply affect mental health. Patients may develop anxiety, depression, or a sense of hopelessness, not because of their disease alone, but because of the way their concerns were handled. Some begin to question their own judgment and become hesitant to advocate for themselves, even after receiving a correct diagnosis.

This emotional toll may also contribute to poorer quality of life. Studies suggest that unresolved feelings of invalidation and shame can persist for years and may even interfere with adherence to treatment plans. When patients don’t feel seen or believed, the entire care relationship suffers [4].

What Doctors Need to Know

Most healthcare providers aim to help, not harm. But even well-intentioned clinicians can unknowingly contribute to long-term distress. In many cases, vague symptoms and inconclusive test results are challenging to interpret. However, when uncertainty is handled with dismissiveness or doubt, the damage can be significant.

Research shows that patients who feel dismissed are less likely to follow up, disclose all symptoms, or trust new providers [1]. Clinicians can help repair this by acknowledging when previous diagnostic paths may have been incorrect and giving patients the opportunity to speak openly about their history. Validating a patient’s experience does not require admitting fault. It simply requires empathy.

A growing body of research emphasizes that trust is a cornerstone of effective care. Small actions, like listening without interruption or affirming that a patient's experience is real, can rebuild damaged relationships and improve both satisfaction and outcomes [5].

Moving Toward Healing

For those who have been through this, healing doesn’t happen overnight. If you’ve ever been told that your symptoms were “all in your head” before receiving a proper diagnosis, your reaction — whether it’s anger, hesitation, or grief — is completely valid.

Here are a few ways to support yourself as you move forward:

• Remember: it wasn’t your fault. Your symptoms were always real, even if they were misunderstood.

• Talk about it. Sharing your story with your current doctor, a therapist, or a support group can help reframe your experience.

• Get the support you need. This might include mental health care, advocacy services, or connecting with others who’ve been through the same thing.

• Take your time. Rebuilding trust in the medical system can be slow, but it’s possible. You get to set the pace.

  
  

Most importantly, know that your story matters, and deserves to be heard.

Why This Research Matters

The consequences of misdiagnosis are not just academic. They shape the lives of real people navigating complex medical conditions. When someone spends months or years being told their symptoms are psychological, it can affect their entire care journey: from how soon they seek help, to how openly they describe their symptoms, to whether they trust future providers.

The research encourages doctors and health systems to listen more closely and take symptoms seriously. That includes recognizing unconscious bias, asking more questions when something doesn't add up, and validating patients' experiences even when the diagnosis is uncertain. For patients, it offers a powerful reminder that their experience is legitimate and deserves to be respected.

Conclusion

At IMIdeology, we understand that misdiagnosis is more than just a clinical mistake. It can delay care, erode trust, and leave patients feeling unseen. That is why our team combines expertise in immunology, nutrition and mental health to look at the full picture. Our multidisciplinary approach ensures that you are not only heard but truly understood, so you can move forward with clarity, confidence, and a care plan that fits your needs.

References

[1] Sloan M, Bosley M, Gordon C, et al. 'I still can’t forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses. Rheumatology (Oxford). 2025. https://doi.org/10.1093/rheumatology/keaf115

[2] Sloan M, Harwood R, Sutton S, et al. Medically explained symptoms: a mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases. Rheumatology Advances in Practice. 2020;4(1):rkaa006. https://doi.org/10.1093/rap/rkaa006

[3] Lupus Foundation of America. Lupus facts and statistics. Available at: https://www.lupus.org/resources/lupus-facts-and-statistics [Accessed May 2025].

[4] Sloan, M., Wincup, C., Harwood, R., Pollak, T. A., Massou, E., Bosley, M., Pitkanen, M., Zandi, M. S., Leschziner, G., Barrere, C., ... & Gordon, C. (2023). Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: An international mixed methods study. Rheumatology, 63(5), 1259–1272. https://doi.org/10.1093/rheumatology/kead369

[5] Kraemer S. (2021). Rebuilding trust after misdiagnosis: where is the liaison between mental and medical?. BMJ (Clinical research ed.), 374, n1671. https://doi.org/10.1136/bmj.n1671