Aging and Long COVID: Stopping Stigma with Concrete Strategies

Although COVID is receding from the public’s consciousness, older adults are still being hospitalized and dying per week at numbers far greater than the general population. Even more concerning is that three-quarters of adults older than age 50 continue to have persistent symptoms after acute infection, and the majority (60%) have not seen a physician to address these concerns.

As two physicians caring for older adults with COVID-19 both in intensive care units as well as following hospitalization in post-COVID recovery clinics, we recognize how pervasive this is and how important these topics are for patients to discuss with their healthcare teams. However, we see firsthand how stigma surrounding Long COVID greatly impacts older adults and can potentially deter people from getting the care they need.

Misdiagnosis of Long COVID Can Be Dangerous

Confusion persists—among patients and providers alike—as to how to define Long COVID. According to the CDC, “Post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19.” There remains a lot of scientific uncertainty around the biological mechanisms underpinning Long COVID. Unfortunately, this lack of clarity has led some to assume the worst and accuse patients of exaggerating, somatizing (when psychological symptoms are manifested physically), or fabricating their symptoms, which has led to incredible stigma.

As clinicians who treat Long COVID, we would like to emphasize that it is a real condition, and in this article, we hope to shed light on the unique experiences of older adults with Long COVID and provide strategies for how to combat stigma.

‘As Long COVID clinicians, we know that “all that long hauls is not Long COVID.’’ ’

At least 94% of older adults experience “everyday ageism” and this deeply impacts their healthcare experiences. Because of preexisting health concerns such as frailty or multiple healthcare conditions, older adults may be at greater risk of developing Long COVID. At the same time, they may also experience overlapping symptoms, such a fatigue, cognitive impairment, insomnia and depression, because of these same preexisting conditions. This complex interplay can lead to older adults having their symptoms either dismissed as “part of normal aging” or minimized.

The consequences of such dismissal of symptoms can be dangerous for older adults. Symptoms such as fatigue, musculoskeletal pain, and mental health problems can lead to restricted activity among older adults and increased inability to carry out their activities of daily living.

On the other hand, older adults can also have symptoms that are misattributed to Long COVID, when they are unrelated and may be signs of a new or worsening healthcare condition. As Long COVID clinicians, we know that “all that long hauls is not Long COVID,” and have seen older adults with new metastatic cancer or autoimmune diseases who have been misdiagnosed with Long COVID.

The dismissal of Long COVID symptoms may be even more fraught for older adults who carry multiple marginalized identities. For example, it is well known that, unfortunately, implicit bias plagues how providers assess patients’ pain and other symptoms. It is also known that older adults who are lower-income or live in disadvantaged neighborhoods are at greater risk than their less vulnerable counterparts of developing impairments after hospitalization, such as commonly occurs with COVID. Moreover, people who were hospitalized with COVID may be facing dueling post-hospitalization conditions as well as post-COVID conditions, which is truly a double-whammy.

Preparing Ahead for Physician Visits Post-COVID

In the face of these numerous barriers, how can older adults and their caregivers make sure that they are getting the appropriate diagnostics and treatments when recovering from COVID? First, it is important to recognize that older adults need a unique and holistic perspective to address any symptoms they may be experiencing. Seeking a primary care physician as a first-stop who is experienced with treating older adults and older adults recovering from COVID is essential.

Seeking comprehensive Long COVID clinics also can be helpful, but sadly they are still too few and far between, which can exaggerate health disparities. If Long COVID clinics are not accessible, advocating for an appropriate subspecialty consultation is important for the most bothersome symptoms—for example, asking for a physical therapy consultation, a pulmonary specialty consultation, a cardiology consultation, a neurology consultation, etc., depending upon the patient’s most burdensome symptoms. Before the visit, keeping a symptom diary may help patients to better delineate and communicate their symptoms.

‘Advocating for an appropriate subspecialty consultation is important for the most bothersome symptoms.’

At the visit itself, patients should bring a trusted friend, family member or caregiver to serve as a “second set of eyes and ears,” to help navigate the healthcare system, especially as some Long COVID symptoms can exacerbate fatigue and hinder comprehension. Patients should bring medication bottles or an up-to-date medication list to in-person or virtual visits as medication interactions after hospitalization or after COVID might also contribute to symptoms. Patients and caregivers should ask questions about symptom management, further subspecialty consultation and resources available in the clinics, as well as opportunities to participate in biomedical research related to Long COVID. Also, they should ask providers about the recommended timeline for vaccines—the new bivalent booster shots are recommended for all individuals who are more than two months from a past infection or their last vaccination.

For clinicians and hospital systems, returning to the Age-Friendly Health Systems Model that prioritizes the crucial “4 Ms” (Mobility, Medication, Mentation, and what Matters) is essential. Clinicians and patients alike should join forces to advocate at local, state and national levels for increased attention to the ongoing societal burdens of Long COVID.

Although there are many barriers that older adults experience when navigating the tortuous course of Long COVID, appropriate attention to—and interventions upon—symptoms, is critical to combating stigma and getting the best healthcare possible.

Lekshmi Santhosh, MD, MAEd, is an associate professor of Pulmonary and Critical Care Medicine at the University of California–San Francisco, and Snigdha Jain, MD, MHS, is an instructor in the Section of Pulmonary, Critical Care, and Sleep Medicine at Yale School of Medicine.