Mental Health in Autoimmune Diseases: A Neglected Aspect

More than 50% of people with an autoimmune disease also suffer from depression and anxiety, a new study finds.

The new research, published in Rheumatology, found that while more than 50% of all people with autoimmune disorders experience depression and anxiety, many are never screened for the health conditions.

On top of that, more than half of those living with an autoimmune disease had rarely—or never—reported their mental health symptoms to a healthcare provider.

Nearly 1 in 10 people worldwide—13% of women and 7% of men—have an autoimmune disease. Considering this number, and the correlation between mental health and autoimmune diseases, a growing number of people are suffering in silence.

'The range and prevalence of these neurological and psychiatric symptoms were higher than previously found and much higher than clinicians expected,' Melanie Sloan, PhD, the lead researcher on the study and a research associate in the Department of Public Health and Primary Care, University of Cambridge, told Health.

'For patients, the important part is that they are definitely not alone if they're getting these types of symptoms, and it is only by telling their doctors that they can get support,' she said.

To better understand this correlation, the researchers surveyed nearly 1,900 people with autoimmune disorders and asked about their neurological and psychiatric symptoms. They also surveyed nearly 300 healthcare providers for additional insight.

Sloan and her team discovered that 55% of people experienced depression, 57% experienced anxiety, 89% experienced severe fatigue, and 70% experienced some sort of cognitive dysfunction such as memory issues.

These rates were dramatically higher than anticipated. For instance, 47% of people with lupus reported having suicidal thoughts compared with the original estimate of 15%.

The researchers noted that many people with an autoimmune disease were less likely to report their mental health problems or ask for help. Most stayed silent due to a fear of being stigmatized. For those who did share their concerns, they reported being ignored or not having their symptoms documented.

'Many people, even without these rheumatic diseases, share a fear of stigma about mental health symptoms that they will be judged,' Sloan said.

She explained that due to the length of time it can take to be properly diagnosed with an autoimmune disease, many patients lose trust in healthcare providers and, in some cases, their own interpretation of their symptoms.

'They are afraid that if they report any mental health or neurological symptoms that it may lead to a return of those pre-diagnosis days and that their future disease symptoms will be dismissed as being due to mental health,' Sloan said.

Another obstacle is that mental health symptoms are not always visible or testable.

'We found some clinicians, particularly the psychiatrists and the nurses very much valued the patient reports, but that some other [providers] felt more comfortable when they had a blood test or a scan result, or could see for themselves a symptom,' Sloan said. 'They wanted objective evidence.'

But the identification of mental health conditions is more reliant on listening to and believing a person's reports.

'Most people just desperately want to be helped to have better lives and need their doctors to validate these distressing symptoms, and not work with a model of 'it has to be seen to be believed,'' she said.

While the link between autoimmune disease and mental health is complex and not fully understood, it does involve interactions on both a biological and a psychological level, said Brent Nelson, MD, an adult interventional psychiatrist and chief medical information officer at PrairieCare, a division of Newport Healthcare.

These connections are due to the complex interplay between cells of the immune system and cells of the brain.

Nelson explained that an autoimmune disease causes the body's immune cells to attack itself. This impacts both the body and brain cells.

'Several factors contribute to this connection including inflammation and immune system brain communication,' Nelson said. 'This inflammation can extend to the brain and may affect mood-regulating neurotransmitters, leading to an increased risk of mood disorders.'

At a psychological level, an autoimmune disease impacts both stress and coping.

'Dealing with the challenges of an autoimmune disease may affect a person's coping mechanisms, in that an individual feels less able to cope with daily life stressors as they are expending a large amount of resources coping with their disease,' Nelson said.

Protecting mental health in any capacity starts with an awareness of the problem, James Jackson, PsyD, a research associate professor of medicine from the Vanderbilt University School of Medicine told Health.

Since people with autoimmune diseases have unique vulnerabilities, there needs to be a heightened emphasis on the importance of self-care and access to mental health interventions.

'This focus can serve as a buffer against new or worsening mental health concerns,' Jackson said.

He also recommends that healthcare providers treating autoimmune diseases connect with mental health professionals.

'Connecting with providers like psychologists or social workers and enlisting them as formal members of a treatment team is not only helpful but often vital and can lead to the early identification of psychological problems which, of course, is a key,' he said.

According to Nelson, living with a chronic illness like an autoimmune disease also can lead to increased stress, anxiety, and depression, especially when coping with the symptoms, managing treatments, and dealing with potential limitations in daily life.

This can be emotionally challenging, leading to feelings of frustration, isolation, and helplessness.

Nelson emphasized that it's crucial to advocate for yourself and stay informed. You also need to keep talking about your mental health symptoms until you find the right healthcare provider.

'Therapy, of course, isn't perfectly effective but, in general, when [people] get the mental health support they need, they improve,' Jackson said. '[They also] develop the coping skills they need to live with difficult symptoms that they didn't ask for and that they don't want—often learning not just how to survive but to thrive.'