Although there is limited data to measure the impact of Long COVID on mental health, studies are emerging particularly around anxiety and depression, which are among the most common mental health diagnoses for Long COVID patients.
It is important for patients and providers to understand the mental health effects of Long COVID. Among the most debilitating symptoms are feelings of loneliness, social isolation, depression, and Post Traumatic Stress Disorder (PTSD). The loss or reduced sense of smell (anosmia; hyposmia) is commonly linked to altered eating, appetite loss, changes in weight, reduced sense of intimacy, and altered relationships to self and others. Patients suffering from Long COVID in caretaking positions may also feel an increased sense of guilt that they cannot provide the level of care that they were able to give prior to their illness. Patients with Long COVID may also feel socially stigmatized for their illness even after they are no longer infectious, or they may experience blame for their perceived personal inability to restore their health. Additionally, the financial strain of healthcare costs or job loss due to the effects of Long COVID can increase stress and decrease mental wellbeing through loss of self-esteem, sense of control, social status, support, and connections.
Although there is limited data to measure the impact of Long COVID on mental health, studies are emerging particularly around anxiety and depression which are among the most common mental health diagnoses for Long COVID patients. In one retrospective cohort study of over 230,000 patients diagnosed with COVID-19, the estimated incidence of an anxiety disorder diagnosis was 17% and 14% for a mood disorder diagnosis in the 6 months following their COVID diagnosis. They also found that the diagnoses were more common among COVID patients than among patients diagnosed with influenza or another respiratory tract infection. Some data also suggest that these outcomes may be more common among patients who had more severe cases. Among patients admitted to the hospital with COVID, one cohort study found anxiety reported among 23% of the over 1600 patients that completed a follow up questionnaire at a median of 153 days after discharge. Another study found that among over 700 patients that completed a follow-up consultation at a median of 9 weeks after discharge, 13.8% screened positive for depression and 10.5% screened positive for PTSD. The data also suggest that these outcomes may be more likely among patients with pre-existing depression or anxiety.
We still have a lot to learn about the relationship between mental health and Long COVID, which is a new and evolving diagnosis. The Long COVID initiative team spoke with Dr. Megan Pinkston-Camp to learn about her perspective as a provider caring for patients diagnosed with Long COVID. Dr. Pinkston-Camp is a psychologist and researcher with the Clinical Behavioral Medicine Service of the Department of Psychiatry of the Lifespan Health system and Brown Medical School in Providence, Rhode Island. We’ve shared some of the highlights from our conversation with Dr. Pinkston-Camp here:
When asked about her experience working with Long COVID patients, Dr. Pinkston-Camp discussed how she applies her expertise and training as a clinical health psychologist to support her patients with Long COVID. She reflected on the experiences on some of her patients.
“I began receiving referrals and working with individuals diagnosed with Long COVID at the end of 2020, beginning of 2021, at a time when we were beginning to hear anecdotal reports and read case studies in the literature. For most patients, when you opened their medical record, it was notable that there were few medical notes prior to their COVID diagnosis, suggesting minimal medical concerns. And then after the diagnosis, the records were filled with note after note, from different specialists, all doing their best to figure out how to help. And within those notes were the voices of the patients, going from doctor to doctor searching for reasons why they still felt ill, why they couldn’t think, why they were in constant pain from headaches and joint pain, and why they couldn’t return to normal as others were able to following a covid diagnosis.”
Dr. Pinkston-Camp continued to share some of the concerns that patients raised in her care with them: “For most, they were still on a journey of trying to find answers.
In meeting with me, many would ask “Am I going crazy?”
Most reflected on their lives prior to their diagnosis, including working full-time jobs, enjoying family life and activities, with minor concerns. Yet, now many months after their diagnosis, they would disclose things that were happening to them that were worrisome. For instance, some shared experiences of driving on the wrong side of the road, taking two hours to complete a task that normally would take them half the time, forgetting important appointments, experiencing panic attacks at the grocery store, or re-reading paragraphs in books multiple times.” Many of the common presenting symptoms among her patients with Long COVID include brain fog, PTSD “as if they were in a war and are still walking around in that war,” sleep concerns including sleep apnea symptoms, chronic pain, and feelings of isolation and shame associated with the diagnosis. They also experience anxiety and fear of being reinfected, including suffering panic attacks when trying to return to daily activities outside of their homes.
The feeling of grief is also common among her patients due to losses they may have experienced since their diagnosis, including loss of loved ones as well as losses to their daily routine. Her patients may have been working full time and living productive lives prior to their illness; however, their persisting physical symptoms of Long COVID have left many not only unable to return to work or participate in their favorite activities but also grieving those losses from their life before COVID.
Long COVID patients are also experiencing extreme fatigue, including the fatigue of searching for answers to a disease that we are still learning about and feeling invalidated by the lack of medical diagnosis for their symptoms. As a provider, Dr. Pinkston-Camp described the tension between providing validation of symptoms and patient experiences while also acknowledging that there is still a lot we don’t know about this diagnosis. The little data that is available is mainly from retrospective studies so there is no known prognosis for her to share with her patients. Additionally, she expressed that while some studies indicate that the mental health effects of Long COVID may be more likely in patients who had more severe disease, she found that most of her patients had never been to the hospital for their COVID illness, indicating that patients across the spectrum of disease severity may be affected.
We discussed why it is so important that all providers, regardless of specialty, are aware of the relationship between Long COVID and mental health and Dr. Pinkston-Camp explained that it is imperative that providers in every discipline are aware of the potential impact of Long COVID on mental health and screen for these symptoms in their Long COVID patients. She discussed how many of her patients have been to several doctors looking for answers to their brain fog and fatigue symptoms, including neurologists, sleep experts, and immunologists. Many patients are not going to mental health providers, primarily due to the well-known stigma associated with seeking help, but also some patients have shared their own internalized shame for placing themselves at risk for covid and blaming themselves for their health outcomes. Thus, providers in other specialties need to be aware of what to look for since patients may be presenting to them first.
Dr. Pinkston-Camp offered recommendations for providers for starting conversations with their patients about mental health and behavioral medicine (e.g., pain, sleep, fatigue) concerns. She recommended asking about symptoms during a provider’s normal workup for their patients. If their patient mentions a COVID diagnosis, Dr. Pinkston-Camp suggested asking if they have noticed any changes since their diagnosis, including changes in their mood, cognitive functioning, and sleep. She says that asking open-ended questions creates a safe space that allows patients to respond openly and honestly about both past and persisting symptoms.
To support Long COVID patients who are expressing concerns about their mental health after a COVID diagnosis, Dr. Pinkston-Camp first recommends providing validation to the patient of their symptoms and highlighting for them that there are many others around the world having similar concerns. Then reflect how vulnerable it may feel to share some of the concerns that they are having and also tiring in their attempts to find answers. She further encourages providers to refer patients to a clinical health psychologist (also referred to as behavioral medicine psychologists). Health psychologists are well-positioned to be included in the care of Long COVID given their expertise in the overlap between mental and physical health concerns. They are trained in the assessment of the biological, psychological, and social factors that contribute to illness and provide evidence-based treatments for mental health and behavioral medicine concerns that are related to medical illnesses. If these providers are not available, she recommended looking for psychologists who work within medical settings and are familiar with Long COVID.
We closed the conversation with Dr. Pinkston-Camp sharing resources available for providers to learn more about Long COVID and mental health:
The Long COVID initiative team thanks Dr. Pinkston-Camp for her continued support for all patients, including those suffering from Acute and Long COVID.