Study: Misdiagnosis of lupus symptoms linked to mental health, trust issues
Using data gathered through large-scale surveys involving nearly 3,400 autoimmune disease patients and clinicians in 2021 and 2022, the researchers found that more than 80% of those who were told by doctors their symptoms were imagined or psychiatric at the onset of their illnesses reported struggling with their sense of self-worth even many years afterward.
Another 72% said the initial misdiagnosis still upset them, while reporting significantly lower mental well-being, higher levels of depression and anxiety, and lower levels of satisfaction with every aspect of medical care compared to patients reporting no psychosomatic or psychiatric misdiagnoses.
The study, published Sunday in the medical journal Rheumatology, was led by researchers at the University of Cambridge and Kings' College London.
Among their other findings, investigators observed links between misdiagnoses and subsequent negative healthcare behaviors, including a significantly higher likelihood of under-reporting symptoms and healthcare avoidance.
The latest study builds on earlier research about systemic lupus erythematosus, including findings that the first symptoms of more than half of lupus patients were initially misdiagnosed as psychosomatic or psychiatric.
Lupus, which is incurable, is similar to other autoimmune diseases in that the body's immune system, which usually fights infections, instead attacks healthy tissue. It is most commonly found among otherwise healthy young women of childbearing years, particularly women of color.
It is notoriously difficult to accurately detect because its signs and symptoms often mimic those of other ailments. Diagnosis is also tricky due to the fact that no two cases are exactly alike, according to Mayo Clinic. Lupus' most distinctive sign -- a facial rash that resembles the wings of a butterfly unfolding across both cheeks -- occurs in many, but not all, cases.
Most people with lupus have a mild form characterized by flare-ups when symptoms get worse for a while and then improve or even disappear for a time. These symptoms include extreme fatigue, fever, joint pain, stiffness and swelling.
Lupus, however, is capable of causing serious complications, including kidney damage, heart problems, blood clots and brain change.
The chronic pain and fatigue associated with lupus can greatly affect patients' quality of life, advocates say, with many reporting they can no longer work full-time or lead a normal social life due to its complications.
Dr. Melanie Sloan of the Department of Public Health and Primary Care at the University of Cambridge, lead author of the new study, said its results show it is exceedingly difficult for patients to mentally overcome an initial misdiagnosis.
"A concerning finding from our study was that the negative emotions and the distrust in clinicians engendered from these types of misdiagnoses often did not improve over time," Sloan told UPI in an email.
"This was apparent in our data showing that over 70 % of people reporting a psychosomatic or mental misdiagnosis said that it still upset them and also during the interviews where people were clearly very distressed when remembering these misdiagnoses.
"I think most of the difficulty arises because most people never had the chance to talk about how they felt about the misdiagnosis. Once they received the correct autoimmune diagnosis, it was common for the doctors to assume that the patient would then be able to just 'move on.' But the damage was far deeper than most of the doctors interviewed realized."
Words and feelings from their early misdiagnoses stick with some patients well into middle age, even if they later find supportive doctors.
"I think it is very hard to fully overcome the damage from the sense of betrayal, disempowerment, worthlessness and injustice that these types of misdiagnoses often cause," Sloan said. "As one of the patients in our research team described it, they live the rest of their life with 'seared souls.'"
Because many lupus sufferers are young women who otherwise seem healthy, it's easy for some doctors to pigeonhole their complaints of fatigue and joint pain is "all in their heads," said Dr. Susan Manzi, medical director of the Lupus Foundation of America and chair of the Medicine Institute at Allegheny Health Network in Pittsburgh.
It's also understandable that such experiences can lead to long-lasting issues of trust with medical providers, she told UPI.
"You've got 15-to-45-year-old young women, many of them women of color," Manzi said. "So you're 20, and you're walking into a doctor's office complaining of pain, fatigue, rash. ... What are they going to say? 'You're fine. It's stress. This is in your head.'
"Over and over I hear that story. They're not the prototype of people who should be sick. I can't tell you how many times I've heard women say they were told, 'Oh, you're depressed, have your husband take you out to dinner.'"
The way to change that is to urge primary care doctors to add lupus -- which remains relatively uncommon -- to the list possible ailments to be checked for when such complaints are presented, which is a goal of the Lupus Foundation, Manzi said, adding, "You have to think, you have to be sensitive, and you have to understand the population that's at risk."
The British study similarly recommends that clinicians consider the "potential adverse impacts on patients" and offer support to reduce any persisting negative impacts.
Sloan, meanwhile, offered a defense of front-line caregivers, citing the difficulties of detecting oftentimes subtle autoimmune diseases and the potential consequences they face over misdiagnoses.
"With fear of litigation and not wanting to highlight a colleague's error, they may not want to explicitly identify to the patient that they understand that they were misdiagnosed," she said.
"But being empathetic and saying sorry for the bad past experiences does not mean admitting liability by the health service, it just means that the patient feels heard, validated and safer."
It can be of immense benefit for patients just to hear from a doctor, '"I am so sorry for what you have been through to get this diagnosis, I am going to do my absolute best to ensure it never happens again,'" she said.
Lupus is difficult to diagnose on first blush and has been called "The Great Imitator" or "The Great Masquerader" because its symptoms often can mimic those of other diseases, said Dr. Saira Sheikh of Lupus Therapeutics, the clinical research affiliate of the Lupus Research Alliance.
"In addition, there is no single test that is used definitively for the diagnosis of lupus, which is why the disease is easily misdiagnosed and there can often be a delay in receiving an accurate diagnosis," she told UPI.
One of the problems is a lack of patient access to subspecialists who have experience and expertise in lupus and could make accurate diagnoses earlier, Sheikh said, while also agreeing that primary care providers could be better informed about what to look for.
"Ultimately, we need better diagnostic and prognostic markers in lupus," she said. "There is a lot of research that is ongoing in this space to enable us to develop better tools to diagnosis lupus and follow response to treatment."
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