Autoimmune disorders result when your body’s immune system becomes overactive, causing it to attack and damage your tissues. There is a good deal of overlap between autoimmune disorders and psychiatric illness. Many times, they co-exist, and one can contribute to the other. However, in the context of a busy physician’s office, the diagnosis may be made incorrectly.
For example, diseases like lupus, primary Sjogren’s syndrome, multiple sclerosis, and Grave’s disease are often associated with many neuropsychiatric symptoms. These symptoms range from anxiety and depression to psychosis. Previous research reported that patients with systemic lupus were often misdiagnosed with a psychiatric disorder before and even after having a lupus diagnosis. These patients frequently report feeling dismissed by their providers and told that they had “medically unexplained symptoms.” One patient who was deeply affected stated, “I still can’t forget those words.”
According to Dr. Lola Falasinnu, assistant professor of immunology and rheumatology at Stanford University, “We don’t yet have precise data on how frequently autoimmune diseases are misdiagnosed as psychiatric or psychosomatic conditions.” She further states that there are diagnostic errors across all areas of medicine.
One of the challenges in diagnosing autoimmune disorders is that there is significant overlap with many psychiatric conditions. Anxiety, depression, perceptual disturbances, and sleep issues are common in both. Autoimmune disorders often flare and then remit, so depending on when a patient is seen, the presentation may be very different, further increasing the difficulty of an accurate diagnosis. Autoimmune disorders are statistically more common in women. Unfortunately, there is a gender bias in medicine that may contribute to the delay of an accurate diagnosis since women are more likely to be given a psychiatric diagnosis.
A 2019 study published in Neurology reported that of all new neurology patients referred to centers for evaluation of multiple sclerosis, 30 to 67 percent were not diagnosed correctly. Therefore, correct diagnosis and initiation of appropriate therapy were sometimes delayed for over 20 years when symptoms could have been slowed or ameliorated.
A recent article published in Rheumatology looked at the adverse effects on patients who had autoimmune disorders but were misdiagnosed with a psychiatric illness. The researchers examined the relationships between patients and providers using a Patient Health Engagement model. This model is rooted in health psychology and views patient engagement as a complex process of psychological adaptation to illness and its impact on the patient’s self-image.
The participants in this study were taken from two sources: one was a group of over 1,500 patients who completed an interview and a self-reported survey concerning COVID-19 and medical care. The second group, which comprised over 1,800 participants, was interviewed and completed surveys on neuropsychiatric symptoms in autoimmune disorders. Most of the patients with autoimmune disorders had lupus or rheumatoid arthritis. The goal was to investigate the impact of perceived misdiagnoses on medical relationships, healthcare behaviors, and overall well-being.
The results showed that psychiatric misdiagnosis of autoimmune disorders was strongly associated with ongoing adverse influences in multiple areas of patients’ lives. Over 80 percent of patients with this experience said it damaged their self-worth. In some of the participants who had a pre-existing psychiatric illness, the misattribution of their autoimmune symptoms as psychiatric sometimes made their underlying psychiatric symptoms worse. One patient stated,
“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.”
Many participants who experienced an arduous path until the correct diagnosis was made reported decreased trust in providers. One patient stated,
“[This experience] taught me to calibrate my trust carefully. To date, a specialist I see is my best medical ally…we are making a good team. Do I trust them? Sort of, but not blindly, never blindly.”
Once the results of this study were made public, attempts to ameliorate the problem were provided. According to the authors, three distinct steps on the part of the clinician are necessary. First, they must recognize that neuropsychiatric symptoms are a common and direct manifestation of autoimmune diseases. Second, an assessment by appropriately qualified specialists is needed to evaluate the indirect causes of psychiatric symptoms in patients with chronic diseases, including poor quality of life, medication effects, and adverse medical experiences. Third, they must appreciate that because psychiatric misdiagnoses are common in autoimmune disorders, it is essential to evaluate the impact on patients who have been misdiagnosed, so that it does not negatively affect the doctor-patient relationship or lead to underreporting on the part of patients.
Here are some tips that Dr. Falasinnu recommends to help patients advocate for themselves, obtain a proper diagnosis, and receive optimal treatment.
- Be confident. Know that your condition is valid and real. Advocate for your needs politely yet assertively when discussing symptoms and concerns.
- Track your symptoms. Take an active role in your care by keeping a detailed symptom diary—noting the timing, triggers, and severity of specific manifestations. Tracking medications and treatments, including their effects, can provide valuable insights for doctors.
- Get specific. Ask whether there are certain tests to rule out or rule in a particular diagnosis.
- Don’t stop at blood tests. Ask whether your condition may be due to a rheumatic autoimmune disease—even in the absence of abnormal blood tests.
- Bring an ally to your appointments. Bring a trusted family member or friend along to a doctor’s appointment to help reinforce key points, take notes, and provide emotional support.
- Seek out a specialist. Ask for referrals to specialists who may help clarify the cause of the symptoms.
- Find support. Connect with patient support groups or online forums. They can offer guidance, shared experiences, and encouragement throughout the diagnostic journey.
- Get a second opinion. Consider seeking a second opinion if you are facing a complex or unresolved medical issue. A second opinion can provide fresh insights, confirm a diagnosis, or open the door to additional testing or alternative treatment options.
