To counter a throwaway culture, Catholics must reckon with long COVID

According to the Centers for Disease Control and Prevention, one in five people infected with COVID-19 suffer from long COVID, a condition indicated by prolonged illness and symptoms that last for more than four weeks after initial infection. Sufferers, also known as "long haulers," endure a range of symptoms: Some report altered sense of smell or taste, heart palpitations and vertigo. Others struggle with breathlessness, stomach pain and fatigue. Long haulers report new, returning, or ongoing problems affecting the neurological, respiratory, musculoskeletal, renal and cardiovascular systems. Even "mild" cases of COVID-19 can result in debilitating long COVID.

Marie Kalb, a Catholic long-hauler based in Santa Clara County, told me that her illness began with a "mild fever, cough and chest pain." Alarmed by her chest pain, she sought out medical advice, but was dismissed by doctors, as her test results looked "fine." She became ill just 15 days before COVID-19 became a national emergency, and as a result could only secure a PCR test one month after her initial infection. By then, her test read negative — but her symptoms persisted.

Throughout her illness, Kalb struggled with post-exertional malaise, a condition where even minor physical exertion requires extensive recovery. She noted, "Every time I felt better, I would rejoice and try to 'push through' any remaining fatigue. It backfired every time." To this day, she deals with symptoms, ranging from exertional fatigue to chest pain. Even mild activity, like kneading bread too vigorously or taking out the trash, triggers a fever.

Though she has seen improvement through the "pacing" method — moving when able and resting when needed — Kalb stressed that improvement is not full recovery.

"I still have to weigh every single thing I do, every single day," she explained. "I have to consider how much exertion it will be, whether I'll have opportunities to rest, whether it's hot and humid," among other factors. "I can't just thoughtlessly move my body and do things anymore."

Amanda Martínez Beck also shared her long COVID experience with me. Beck, a disabled Catholic living in Texas, was infected with COVID-19 in December 2020. After being hospitalized for over a month, and nearly dying from the infection, she had to relearn to walk again while managing agonizing symptoms. To date, Beck struggles with extreme fatigue, body aches and impaired memory.

Kalb and Beck's experiences illustrate the profound impact long COVID can have on sufferers, and how it interferes with daily life activities. While peers follow calls to "live with COVID," those with long COVID struggle to stay afloat. Census data indicates that long COVID even prevents sufferers from working. A recent report by the Brookings Institution revealed that around 16 million working-age Americans have long COVID today. Of these sufferers, more than 2 million are out of the workforce due to long COVID — that's 1.5 to 2% of the entire civilian labor force. The annual cost of those lost wages is a staggering $170 billion dollars yearly. And long haulers who lose these wages battle to secure disability benefits as they fight for survival.

Yet long haulers' suffering is obscured and ignored by many. From the podium to the church pulpit, our leaders speak of the pandemic in the past-tense, tout infections as "mild" and make little to no mention of long haulers. When COVID complications are discussed, they are either minimized, treated as "rare" cases only affecting vulnerable groups, or are attributed to a personal, moral failing on the part of the individual sufferer. These discussions ignore the sobering truth — that anyone can develop long COVID — and further ostracize long haulers.

Even more sobering is the scarcity of treatments for long haulers. Though Kalb's condition improved after getting a vaccine, and Beck began a medical regimen to help with her cognitive function, there's no silver bullet to combatting long COVID. So sufferers navigate debilitating illness with few treatments and institutional supports.

Long haulers have been dealt innumerable blows during the pandemic. They struggle to work and care for themselves and their families, while mourning the loss of previous routines and social groups. Ignored and minimized by peers, institutions and even faith communities, they despair. It should come as no surprise that many long haulers battle suicidal thoughts and pursue suicide and assisted dying.

Pope Francis has long been a critic of euthanasia, condemning the throwaway culture that enables it. Long haulers are also victims of throwaway culture — they are pushed to the margins while being denied aid, financial and social supports, and social recognition. One Canadian long hauler applied for MAiD, Medical Assistance in Dying, because she could not find financial support after losing her job from debilitating long COVID symptoms. To truly combat throwaway culture, Catholics must reckon with long COVID, not only as an economic or social issue, but also as a "life issue" deserving the church's attention.

The church must first recognize that COVID is a mass disabling event, and that long COVID threatens everyone. Priests and parishioners should take stock of how they speak about COVID and chronic, unexplained illness, avoiding homilies and attitudes that "subtly blame the sufferer for what they're experiencing," notes Kalb. Parishioners should "listen when people tell you they are suffering," she said, acknowledge their plight, and commit time to addressing the needs of ailing neighbors, through material and spiritual support.

The church should also embrace a "preferential option" for long haulers and other vulnerable groups. "I love that the church makes room for disabled people in doctrine," Beck said. "Now it is time for her to make room for disabled people in practice!"

"Making room" requires accessibility: Churches should ensure they have accessible entryways for walkers and wheelchairs. And though some parishioners may grumble about returning to mask wearing, we should reinstate mitigation measures for the sake of medically vulnerable parishioners so they might be able to come to Mass.

These actions may be inconvenient, but they demonstrate, in the words of Francis, "loving concern for each and every person … [including those] who are often the last we think about," which is an antidote to throwaway culture. Catholics can also join groups, like Long-COVID Alliance, to advocate for sufferers near and far.

As the pandemic persists, the church is called to be a place of hospitable refuge for long haulers. As Catholics, we must resist the all-too easy impulse to minimize, disregard and distance ourselves from the startling reality of long COVID for the sake of comfort and convenience. We must be present to ailing long haulers, acknowledge their suffering, and pledge to advocate for and alongside them. In doing so, we can best resist throwaway culture, and assert the dignity of those made vulnerable during the pandemic.