A recent study suggests that individuals with systemic autoimmune rheumatic diseases (SARDs) may be experiencing undiagnosed mental health conditions due to a reluctance to discuss these issues with their healthcare providers.
The research, which analyzed self-reported mental health symptoms from approximately 1,800 SARDs patients, including those with systemic lupus erythematosus (SLE), inflammatory arthritis, vasculitis, Sjögren’s syndrome, polymyalgia rheumatica (PMR), undifferentiated connective tissue disease (UCTD), myositis, and systemic sclerosis (SSc), revealed that 55 percent of patients exhibited symptoms indicative of depression, while 57 percent displayed signs of anxiety.
The study findings, which were published in the journal Rheumatology, revealed that three-quarters of these individuals reported that their doctors seldom, if ever, broached the topic of their mental health.
“Currently there seems to be this collusion of silence, whereby many doctors don’t want to ask about mental health, and patients don’t feel comfortable reporting their mental health symptoms,” says lead study author Melanie Sloan, PhD, of the department of public health and primary care at the University of Cambridge in England.
Apprehension About Misdiagnosis and Gaslighting Could Hinder SARDs Patients in Communicating Mental Health Issues
The study highlights a significant gap between patients experiences and physician awareness, with fears of misdiagnosis and a sense of being overlooked contributing to patients’ hesitancy in reporting mental health concerns.
Dr. Sloan, one of the researchers involved, suggests that patients often feel that healthcare professionals prioritize visible physical symptoms over psychiatric issues. Moreover, many SARDs patients navigate through various specialists before receiving an accurate diagnosis and treatment, which adds to the challenges they face.
“Even after the correct diagnosis of a systemic autoimmune rheumatic disease, we have found that patients are then psychologically scarred by these previous negative medical experiences, and they understandably find it very difficult to trust and open up about their symptoms, particularly mental health ones,” Sloan says.
“They strongly fear that reporting these types of symptoms may lead to another misdiagnosis, or that a mental health diagnosis will make their reports of their other symptoms be more likely to be dismissed or disbelieved in the future.”
Patients and Doctors Don’t Agree on Frequency of Their Mental Health Discussions
Data collected from 289 clinicians, including rheumatologists, neurologists, psychiatrists, primary care providers, and specialists treating rheumatology patients, revealed a discrepancy in perceptions between patients and doctors regarding the frequency of mental health discussions.
While a majority of patients claimed that doctors seldom or never inquired about their mental well-being, only 4 percent of clinicians acknowledged this tendency. Additionally, patients reported infrequent raising psychological concerns on their own, while doctors believed this was true for a mere 10 percent of patients.
Michael Eriksen Benros, MD, PhD, a professor at the Mental Health Centre Copenhagen and the University of Copenhagen in Denmark, said, “Mental health issues are too often overlooked, and specialists in rheumatic disorders might be more prone to primarily focus on the more general medical condition, and miss the very prevalent mental health issues, which require a more holistic approach focusing on the entire patient and the combination of symptoms they experience.”
Notably, Dr. Benros was not involved with the new study.
Dr. Benros emphasizes the potential difficulty patients may encounter in managing their physical health when mental health issues are overlooked, as the latter can significantly impact overall quality of life.
Does Better Physical Health Ease Mental Symptoms?
However, there is optimism that addressing underlying disease symptoms can contribute to improved mental health. Neuroimmunology specialist Robert Dantzer, PhD, who also wasn’t involved with the new study, notes the potential for treating physical symptoms to positively influence mental well-being.
“It is very difficult for physicians to tell the difference between what is intrinsic to the patient and what is due to the disease. Most physicians believe that treating the disease will treat the patients’ symptoms, and this belief is probably strengthened by the results of clinical trials that target neuropsychological symptoms — mainly fatigue and depression — in autoimmune disorders and show an improvement of symptoms in most cases,” Dr. Dantzer says.
For patients concerned about their mental health, Dr. Benros advises providing detailed explanations to healthcare providers about their feelings. Patients are encouraged to directly inquire about adjustments to their treatment plans to address specific mental health symptoms.
Do Not Underestimate Your Own Resilience
On a positive note, individuals with autoimmune diseases may possess more coping skills than they realize to manage prevalent mental health issues like depression and anxiety. Dr. Dantzer suggest that patients should not underestimate their resilience, offering a glimmer of hope amid the challenges associated with autoimmune diseases and their impact on mental well-being.
“Patients with chronic medical conditions are usually more resilient than healthy people because they need to learn to live with their condition and they have to listen to their body to predict the next attack,” Dantzer adds.
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