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It’s time to stop stigmatizing long COVID patients with mental health conditions

James C. Jackson, PsyD
Conditions
July 19, 2023
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Mental health conditions are common among individuals with long COVID due to various factors. These include the direct effects of COVID-19 on the body, such as neuroinflammation, as well as the circumstances often associated with the condition, such as job loss, reduced income, disconnection, isolation, chronic pain, immobility, and the persistent feeling of being unwell. Alongside cognitive impairment and fatigue, mental health issues form what I call the “unholy trinity” of challenges experienced by COVID long haulers. Studies indicate that mental health disorders, including anxiety, depression, PTSD, and obsessive-compulsive disorder, may be the most prevalent of the three, affecting more than 30 percent of long COVID patients. Unfortunately, many individuals with long COVID hesitate to seek mental health treatment, choosing instead to silently struggle. Why is this the case, and what can be done about it?

As a neuropsychologist at Vanderbilt’s Critical Illness, Brain Dysfunction, and Survivorship (CIBS) Center, I oversee multiple support groups for long COVID patients grappling with various physical symptoms. In a recent session, the conversation turned to mental health. Miguel shared his experience, stating, “I explained everything to my doctor—the exhaustion, dizziness, and shortness of breath. But as soon as I mentioned my fear of contracting COVID again, he prescribed Xanax, suggesting it would alleviate all my symptoms and get me back on my feet, back to work.”

This narrative, or variations of it, is all too common. Patients are hesitant to discuss their mental health challenges with health care providers because they fear that their concerns will be trivialized, dismissed, or met with a condescending attitude suggesting, “It’s all in your head.” While patients have the right to decide how much they want to share, when a climate exists that discourages them from discussing their difficulties, a genuine problem emerges. As a neuropsychologist, I am deeply concerned, and you should be too.

When long COVID patients cannot openly address symptoms of depression, anxiety, PTSD, or other mental health conditions with their doctors, they are unable to access the help they desperately need. Scientific research has demonstrated that evidence-based treatments, such as cognitive therapy for depression, cognitive processing therapy for PTSD, and exposure and response prevention for OCD (which has emerged as a problem among long haulers), can significantly alleviate distress, reduce symptom burden, improve quality of life, and restore functioning in relationships and society. In short, these treatments can greatly improve people’s lives, enabling them to participate in work, school, family, and community. Patients who do not receive such treatments will never experience these benefits. Untreated mental health concerns consistently exacerbate long COVID patients’ physical and cognitive symptoms. Research shows that individuals with depression and another medical illness often exhibit more severe symptoms of both conditions. Stress and anxiety intensify symptoms of chronic illnesses across the board, while conditions like depression and PTSD can lead to increased social isolation—an established predictor of poor health outcomes—and worsen cognitive problems, particularly in attention and memory.

So, how can we foster an environment that encourages open discussions about mental health? One crucial step is to avoid psychologizing long COVID patients—or any patients—excessively. We must refrain from viewing all their symptoms through the lens of mental health to the extent that we treat all physical symptoms, which may be largely invisible or unexplained, as mere manifestations of psychological illness. We must recognize that while mental health conditions can cause physical symptoms in some cases, they are often unrelated. Patients can experience both physical and mental health issues, and optimal health requires addressing both. Many long COVID patients endure multiple debilitating symptoms, and each one must be carefully considered and treated. This process will require time and attention.

Another important consideration is to screen all long COVID patients for highly prevalent mental health concerns. This screening should not be done to dismiss other symptoms or narrow the focus of care, but rather to gather additional data points and help alleviate any possible suffering. Over a decade ago, a similar protocol was implemented in VA hospitals, where all patients are screened for PTSD, irrespective of their symptoms. This approach has proven effective in providing much-needed mental health treatment to millions of patients.

We must also recognize the devastating effects of stigma in a culture and health care system that still perpetuates the idea that mental illness signifies weakness, laziness, incompetence, or various character flaws. Efforts should be made to reduce this stigma as much as possible. Normalizing the experience of mental health struggles involves asking patients about their stress levels, anxiety, and motivation. Inquiring whether they have noticed any recent changes in their mental health is also essential. It is important to acknowledge that many of us are grappling with challenges in light of the pandemic and its aftermath, and treatment options are available. When appropriate, sharing personal mental health stories can create an environment where patients feel safe sharing their own experiences. Being diagnosed with OCD in 2018 and undergoing the subsequent struggles and challenges have made me a better doctor. By being vulnerable about my own humanity, I have fostered bonds and safe spaces with my patients, allowing others to speak up and begin receiving the help they require.

Recently, a woman in our long COVID support group contemplated suicide, which is not an uncommon occurrence among long haulers. Her concerns were so severe that she sought help at a local behavioral health facility, where she received excellent and life-changing care. She is now on a path to recovery, seeing a psychologist weekly and rediscovering hope—a commodity that had been in short supply until recently. However, due to her skepticism of doctors, it took her years, not months, to voice her mental health struggles, resulting in unnecessary suffering and almost losing her life in the process.

Let us not engage with patients so thoughtlessly that they believe it is rational to conceal their mental health concerns and endure mounting stress and suffering. Let us not contribute to the shame and silence surrounding patients with mental health symptoms. Let us not wait until contemplation turns into tragic action. Instead, let us choose to listen, validate, and believe. Let us create a culture where conversations about mental health are embraced, validated, and encouraged. Simultaneously, let us prioritize the delivery of effective and life-changing mental health care.

James C. Jackson is a research professor of medicine.

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It’s time to stop stigmatizing long COVID patients with mental health conditions
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