COVID-19 Recovery? My Long-Haul Experience With Infectious Illness Suggests Disability.

People who say, “I’ve recovered from COVID-19, what’s the big deal?” are wrong. I have lived with long-term disability stemming from acute infectious illnesses like COVID-19 and polio. One winter when I was 17, I was struck with a relentless flu. I “recovered,” yet when spring came, a relative observed how my legs were different sizes. I went for medical testing even though I had no notable symptoms. I learned that the flu left me with permanent tibial nerve neuropathy, where my body attacks its own protective myelin that coats the nerve, leaving one leg severely atrophied.

My disability developed during the sixteen-year negative chain reaction that my body has suffered following this initial atrophy. Over time, my hip and foot muscles have severely weakened. From an irregular gait, I have herniated discs in my spine causing lower back pain. My dominant side, though often overlooked, is overworked. I have undergone painful surgeries, intravenous steroid treatments, and physical therapy.

This package deal comes with chronic pain, numbness, weakness, imbalance, weight swings, fatigue, sleep disruption, and more. This sequalae also creeps in at random making it difficult to lead a healthy life. I once broke a few toes by simply rising from the sofa.

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While most people recover from COVID-19 within weeks or a few months, for many the virus has caused long-term damage to the lungs, heart, kidneys, and/or brain. COVID-19 long haulers — those who have recovered yet still experience symptoms up to a year post-recovery — experience sequalae of fatigue, body aches, shortness of breath, difficulty concentrating, inability to exercise, headache, loss of taste and smell, sleep problems, and more. This is a disability.

According to the CDC, 61 million adults in the United States live with a disability. As early studies suggest that 10 percent of those who contract COVID-19 will become long haulers, we can expect more adults coping with disability in the future. Consider the following: the most common disability types, mobility, and cognition, overlap with COVID-19 long haul symptoms; pandemic-related neuro/psychiatric effects are emerging parallel to patterns following the 1918 Spanish flu and polio pandemics; and two in five adults ages 65+ had a disability pre-pandemic — the same age group at risk of serious illness.

Existing evidence suggests those who have “recovered” from infectious illnesses like me may have sequalae up to five, ten, or more years. While the number of people who develop severe pandemic-related disability might seem low at 10 percent, what matters is that chronicity exists and that all those who experience long-term problems become vulnerable when the next illness or disaster strikes.

The NIH and CDC are beginning to dedicate resources for understanding COVID-19 long haulers. Yet, the needs of millions of people coping with disability resulting from acute infectious illnesses have been overshadowed for too long.

Why has disability been ignored by our government? Is it “too” big or complex of an issue, like health care, employment, and affordable housing? Is it not appealing enough to discuss with constituents? Is it just “too” expensive? Or is this the result of stigma and discrimination?

How can we ensure those coping with disability can fully participate in society? Proposed policies can already meet urgent needs. Single-payer health care is essential: Those with disability, particularly younger adults, are significantly less likely to have health insurance, and many have lost health insurance due to recent job loss. A moratorium on residential evictions and increases in food stamps is needed as adults with disability are more likely to face housing and food insecurities. All COVID-19 response packages have fallen short of providing these fundamental supports.

While we have yet to fully understand the extent of disability in the aftermath of the pandemic, all medical and scientific testimony tells us that we cannot afford inadequate preparedness. Preparedness looks like maximizing the activities and extent of participation of those coping with disability and their families in all policies. Not doing so would be a grave mistake in light of expected disability in the future.

Melissa J. DuPont-Reyes is an epidemiologist.

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