Chronic autoimmune diseases such as rheumatoid arthritis, lupus, and vasculitis (inflammation of the blood vessels) can be difficult to diagnose and are often wrongly identified as psychiatric or psychosomatic (emotional symptoms that manifest physically, like a stress-induced stomachache).
“These [issues] appear to rarely be resolved even after the correct diagnoses. We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage,” Dr. Sloan said.
Misdiagnosis Can Lead to Mistrust — and Self-Doubt
For this analysis, Sloan and collaborators reviewed surveys from two large groups of people with an autoimmune disease, totaling nearly 3,400 participants. Questions were designed to measure self-reported depression, anxiety, and mental well-being, in addition to medical relationships and healthcare behaviors. They also conducted in-depth interviews with 67 patients and 50 clinicians.
In the findings, published this week in the journal Rheumatology, more than 80 percent of participants said that a misdiagnosis of their condition as psychosomatic damaged their self-worth. Almost three-quarters of patients reported that the misdiagnosis still upset them, often even 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,” said one participant with multiple autoimmune diseases.
Another participant shared how not being taken seriously led to self-destructive thoughts: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”
Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care, and they were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services.
As one patient said, the erroneous diagnosis “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words.”
A Tricky Problem to Resolve
“We don’t yet have precise data on how frequently autoimmune diseases are misdiagnosed as psychiatric or psychosomatic conditions,” says Lola Falasinnu, MD, an assistant professor of medicine specializing in immunology and rheumatology at Stanford University in California.
A key challenge in diagnosing autoimmune diseases is that neuropsychiatric symptoms are often part of the disease itself, rather than separate conditions, says Dr. Falasinnu, who was not involved in the study. This overlap complicates the diagnostic process, as patients may initially be labeled with psychiatric conditions when their symptoms are actually driven by underlying autoimmunity issues.
Additionally, autoimmune disease symptoms often wax and wane, with periods of more intense symptoms followed by quieter phases, further complicating diagnosis.
Many of these conditions also lack definitive diagnostic tests, increasing the likelihood of misdiagnosis or delayed recognition.
Bias May Also Drive Misdiagnosis and Dismissal
Another critical factor, Falasinnu says, is that autoimmune diseases disproportionately affect women.
“Research suggests that their symptoms are more likely to be dismissed as psychosomatic,” she says. “This gender bias in medicine may contribute to delays in proper diagnosis and the unnecessary labeling of autoimmune symptoms as psychological rather than physiological.”
How to Advocate for Yourself at the Doctor’s Office
Falasinnu offers these tips on how patients can speak up for themselves in order to get a proper diagnosis and 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.
For Falasinnu, this study recognizes an important issue that many people with autoimmune diseases must deal with.
“Still, more research is needed to distinguish between misdiagnosis and the evolving recognition of neuropsychiatric features as a core part of autoimmune disease pathology,” she says.
