Christian psychologist Ashley Trieu thought she had already come to terms with her body’s limits.

After years of questioning, she began to accept her cerebral palsy on a mission trip to Africa 15 years ago when she and her group leader, who is quadriplegic, discussed Paul’s thorn in the flesh.

“I realized that God had chosen to heal me at a spiritual and emotional level but not physically,” said Trieu, now a 35-year-old mother of two. “And by the end of that trip, I was not just tolerating [my disability] but embracing it.”

Then came the coronavirus.

In 2020, COVID-19 landed Trieu in the hospital. Her bout with the virus necessitated bimonthly autoimmune infusions that she will need the rest of her life. It also made her realize how much she still expected a certain level of control over her health—and how she’s needing “to rest more in the Lord’s embrace.”

Trieu is one of an estimated 7 million to 23 million Americans who are experiencing long COVID. Around 10 percent to 20 percent of those who contract the disease continue to have symptoms months later; they vary in severity but often include fatigue, brain fog, and breathlessness.

Scientists are still studying what’s behind long COVID, whether the infection persists in tissues and creates inflammation, triggers autoimmune issues that become chronic, or reactivates latent viruses like Epstein-Barr.

Regardless of the etiology, one thing is clear: Both patients and clinicians are learning to live with more uncertainty. And the people around them—family, friends, and church members who seek to care for those with this complex illness—must help them adjust to their new normal.

While church communities regularly care for the sick in their flock through prayers and meals, long COVID isn’t the same as other illnesses. It’s a new condition that emerged in the midst of political clashes and social isolation. There are no clear tests for it, and no timeline for healing. In many ways, it resembles other complex, poorly understood diseases like chronic fatigue. Sufferers can feel misunderstood and are often looking for people to believe them and take their pain seriously.

It meant a lot to Melody Maxwell that her fellow church members in Wolfville, Nova Scotia, brought meals for her for months at a time while she was too ill to grocery shop and cook for herself.

Maxwell has been living with long COVID since a 2020 infection abruptly curtailed her active church life, hiking activities, and rigorous teaching schedule as an associate professor of Christian history at Acadia Divinity College.

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“I appreciate those who have stuck with me throughout these long months,” said Maxwell, who has kept friends and fellow Wolfville Baptist Church members updated through her blog. “I wish I weren’t in it for the long haul, but I’m grateful for those friends near and far who haven’t forgotten me throughout it all.”

Beth Crosby is a fellow church member and retired grandmother of seven who has kept in touch with Maxwell regularly through this process.

“I think it’s important to trust and respect the person’s process, and maintain hope on their behalf,” said Crosby. “Our hope is in an eternal God. This allows us to walk alongside a person in uncertainty.”

But others haven’t experienced the support and care they expected. Trieu, who previously served on staff at her church, thought of her community as a place of safety and acceptance. As she suffered from long COVID, their silence was devastating. “There was no real follow-up, no meals,” she said. “It was tough because I had considered these people my family.”

Many in her church were skeptical of masks and vaccination. “Some saw masks as a liberation thing or a fear thing, but I just saw it as a safety thing,” said Trieu, who lives in Kalamazoo, Michigan. “To me it was no different than a peanut allergy. Would we tell someone we wouldn’t accommodate them and to not be afraid?” She and her husband have begun visiting other churches.

Dean and Karen Fritzemeier of Muskegon, Michigan, also changed churches as a result of long COVID, which Dean contracted in October of 2020.

Before then, the 52-year-old walked seven miles a day, taught math at a community college, and served as a deacon at church. His severe long COVID symptoms have left him unable to work, and he relies on a wheelchair to get around outside the home.

“My brain fog feels like a constant heavy dose of Benadryl,” said Dean Fritzemeier, noting that this is a blessing and a curse—it’s hard to think clearly but it also dulls the pain of reflecting on his condition.

Karen Fritzemeier, who has struggled with chronic health issues herself, stopped homeschooling their two children to return to work to support the family.

“I wrestle with forgiving people, but God has taught me how to forgive and show grace, while also setting boundaries,” she said. Their previous church dropped precautions early in the pandemic. When Dean’s health declined, his fellow deacons provided yardwork help but refused to acknowledge his diagnosis for political reasons, she said.

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The Fritzemeiers now attend a different church and have received significant financial help from family, friends, and their church community. “Every time I begin to get nervous about money, God says, ‘Here, Karen, I’ve got this,’” she said. A fundraiser for Dean’s hyperbaric chamber treatments this summer raised $6,000, covering the need completely.

Dean and Karen marvel at how their roles have changed (“I used to be the one with a handicapped tag, now he is”), and how their marriage is stronger than ever. “We have learned to live one day at a time because we have to,” said Karen Fritzemeier. “There is still a lot of joy in every day. We don’t feel sorry for ourselves.”

Making life changes

So much of learning to live with a chronic illness like long COVID involves adjusting to new limitations and needs.

Laura Martino is the director of clinical operations for Good Samaritan Health Centers in Norcross, Georgia. Good Samaritan, which offers free healthcare for the uninsured and serves many immigrants, has seen dozens of its patients develop long COVID and is creating protocols to treat them.

“Patients come to us scared and tired and often embarrassed,” said Martino. “But we are able to come alongside them and say, ‘You’re not crazy, and we will walk with you through this as long as it takes.’”

One man came to the clinic’s drive-up tent clinic during a frigid day at the beginning of the pandemic, having just been discharged from the hospital with COVID-19 complications. Wearing full personal protective equipment (PPE), Martino and an assistant got into his car and examined him, then refilled his oxygen and referred him to a pulmonologist and cardiologist.

Nine months later, the man saw big improvements with his long COVID. But he had to make a number of life changes to make this possible: keeping his specialist appointments, remembering to take his medicines, making better food choices to manage his other chronic conditions, and accepting the counseling provided by Good Samaritan to help his wife manage the stress of becoming a caregiver.

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This whole-person approach is a necessary part of healing from complex illnesses like long COVID.

“I used to work 50- to 60-hour workweeks but now can only work 20 hours a week,” said Joshua Lickter, pastor of Incarnation Anglican Church in Roseville, California, who has had long COVID for two years. “And I now preach just two times a month instead of four. Any more and I wouldn’t be able to do other things like meet with people one on one and grow our community.”

In his early days of long COVID symptoms, the traditional tools of spiritual formation that he used to lean on—praying, reading the Bible, fellowship—became difficult.

“I used to have a robust morning and evening prayer schedule using the Book of Common Prayer, but suddenly my brain wasn’t working right, and I couldn’t pray or retain Scripture like I used to,” said Lickter, 51. He turned to audiobooks and audio prayers.

He also began to seek God in nature, withdrawing into the Sierra Nevada mountains every few months to practice stillness and reflection. “God speaks to me through the beauty of creation, and I realized this was actually helping rewire my brain,” Lickter said.

His bishop, who is a trauma therapist, explained that mindfulness rewires neural pathways and can help with traumatic stress. Researchers largely agree; for all we don’t know about long COVID, they’ve found mindfulness and support groups help.

Grappling with suffering

Lickter believes his theology of suffering, shaped as his wife coped with a connective tissue disease, helped prepare him for the blows of long COVID. He went public right away with both his long COVID diagnosis and the depression that came in its wake, sharing his experience from the pulpit and granting an interview to a local news station that later shared his story nationally.

“I’ve had emails from people around the country who thanked me for being honest,” said Lickter. “It was refreshing for them to hear Christians say that sometimes life is hard.”

Ashley Trieu regularly explores a theology of suffering with clients in her counseling role.

“It’s important to make space to let people ask these questions,” she said. “Our human brain doesn’t understand—we want to fill in the gaps.”

She cites the John 9 passage where the disciples ask Jesus if a blind man was being punished for his or his family’s sin, and Jesus says it happened that God might be glorified.

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“I am glad God didn’t take away my cerebral palsy,” said Trieu. “I get to leverage it every time someone asks me in a grocery store why I walk the way I do. It’s an open door to talk about the gospel.”

Her battle with long COVID provides ongoing opportunities to wrestle with the realities of illness while also proclaiming her faith.

“I don’t have all the answers, and that’s okay,” said Trieu. “This may not be a pretty journey, but I am learning to rest in the unknown.”