Advocating for yourself and leaning on your support system can increase your chances of getting a proper diagnosis.
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 stomach ache).
When doctors misdiagnose these conditions as “all in your head,” people may experience damaging effects on their wellbeing and self-esteem, and lose trust in healthcare services, according to a new study based on responses from more than 3,000 participants.
“Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth, and care,” said lead study author Melanie Sloan, DrPH, a researcher with the department of public health and primary care at the University of Cambridge in England, in a statement.
“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, totalling nearly 3,400 participants. Questions were designed to measure self-reported depression, anxiety, and mental wellbeing, in addition to medical relationships and healthcare behaviour. They also conducted in-depth interviews with 67 patients and 50 clinicians.
In the findings, published 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.
The dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatising 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 specialising in immunology and rheumatology at Stanford University in California.
Diagnostic errors are a recognised issue across medicine, with an estimated 11.1 percent overall misdiagnosis rate across diseases.
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 labelled 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 womens’ 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 labelling 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 recognises 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.
SOURCE: Everyday Health
