Surviving the Pandemic as a Kid With Chronic Illness

In the summer of 2009, when Diana was three and a half years old, her health took a tumble. She began to run high fevers and vomit, and gain weight at a baffling pace. She made several trips to the emergency room over the course of two months before doctors finally diagnosed her with two rare, life-threatening conditions. The first, atypical hemolytic uremic syndrome, went after her kidneys, “and really messed them up,” Diana told me. The other, secondary hemophagocytic lymphohistiocytosis, sparked waves of inflammation, and walloped just about everything else. Diana spent months receiving chemotherapy, immunosuppression, and dialysis treatments, and about five years on a low-sodium, low-potassium diet. Sometime during the acute phase of Diana’s illness, Jo noticed that her daughter was holding her books too close to her face. Her optic nerve had been damaged, leaving her legally blind.

Diana is now 15, and her two conditions are in remission. (The Atlantic agreed to use only her and her mother’s first names to keep her health status private.) When the pandemic began, she was a straight-A student closing out her freshman year at a competitive magnet school in Manhattan. She was learning bass guitar to start a band with her friends. She used a white cane, took a fistful of medications morning and night, and was still cycling through the offices of about half a dozen doctors each year. But her medical visits and treatments had, for years, felt routine—background noise to her vibrant life.

Then the coronavirus crash-landed in New York, relegating Diana and her parents to their three-bedroom home in the Bronx. Last March, her classes went entirely virtual, lashing her to a computer for most of her day. By the beginning of April, Diana was dealing with a trio of new symptoms. Within minutes of turning on a screen, she’d be flooded with a wave of nausea—rocking, jolting sensations that made her feel like she was trapped in a zigzagging car. Pain would intermittently grip the sides of her head. And for about 80 percent of her day, she told me, her eyes ached as though “someone had been holding them open for a really long time,” making it nearly impossible to find and focus on the words and numbers that flashed in front of her.

She’s had little respite in the year since, as her doctors have struggled to diagnose her symptoms and rein them in. It’s a bad spot to be in, Diana told me, while her classes are still taught mostly on Zoom, and her social relationships are tethered by virtual lifelines. Early last fall, she decided to permanently log out of the Discord platform that her friends have been using to exchange messages, despite knowing how severely it would deepen her isolation. “I’ve missed half a year of inside jokes,” she told me. “It’s hell.”

The triad of neurological symptoms has been so consuming that the threat of the coronavirus itself blipped almost entirely off Diana’s radar. Despite following all precautions, she got a mild case of COVID-19 a couple of months ago—likely during a trip to the optometrist, and within days of both her parents’ second shots. She took the virus seriously, holing up in her room and leaving only to make masked trips to the bathroom. A year into battling her mystery illness, getting COVID-19 was “almost a relief,” she said. This time, at least, “I knew exactly what was wrong with me.”

Diana is, in some ways, an exceptional case. At 15, she is on the cusp of being eligible for Pfizer’s vaccine, but can’t yet receive the lifesaving shot. She is African American and Asian American—two groups that have experienced heightened discrimination in recent months—though she and her mom say race hasn’t been a huge factor in their pandemic experience. Her chronic health issues are an additional stressor; in the pandemic’s early months, Jo worried that her daughter’s weakened kidneys would put her in the coronavirus’s crosshairs. In a time of chaos, Diana has had to seek more medical care, not less, upping her exposure to others. The changes the global crisis has wrought seem to have broken the tenuous truce she had with her health.

“The quarantine, the isolation, the remote learning, that has been tragic—that has hit everybody,” Carolina Pombar, Diana’s pediatrician at Mount Sinai, told me. “In her case, I think it has been even worse.”

But within Diana’s pandemic experience are echoes of many others’. Diana is one of millions of Americans living with a chronic health condition—many of whom have had to chart their own course through the pandemic. She is also among the many young adults who have been driven into hiding at a time when social development matters most, and have felt their optimism and self-worth diminish as a result. Around the world, teenagers are reporting serious declines in mental health—an alarming trend experts have called a “crisis” that will likely ripple throughout the rest of adolescence and beyond. Much of COVID-19’s health fallout, they told me, will have nothing to do with the coronavirus itself, but everything to do with the pandemic it has caused.

The stress, solitude, and interminable parade of screens have certainly eroded Diana’s mental and physical well-being. Since last spring, when the headaches, nausea, and eye pain started, she’s roughly quadrupled her trips to doctors, in specialties as wide-ranging as neurology, ophthalmology, allergy, gastroenterology, and otolaryngology. Even after a year of tests and dozens of appointments, Diana’s doctors aren’t completely sure what’s at the root of her symptoms. The latest theory revolves around a potentially deviated septum, which not only would provide the relief of a clear diagnosis but could be fixed with a same-day surgery. But that could still turn out to be a dead end. “I excel at stumping the medical community,” Diana told me.

Remote learning—a hurdle that’s placed millions of children in front of screens this past year, and heightened their sense of solitude—likely bears at least some of the blame, a sort of collateral damage from the coronavirus. “It’s the fallout of the fallout,” as Diana puts it. She jokes darkly that she’s only now starting to hear her teachers and classmates complain openly of serious Zoom fatigue. “It took a year for this to catch up with y’all,” she said. “And it took me a month.”

If the symptoms don’t let up soon, Diana could be in for a few more rough months. Her school is back to hybrid learning, with students on campus two days a week. But most of Diana’s classroom time, whether in person or not, remains dependent on Zoom; she still spends more than six hours of her day staring at screens. Although prescription lenses have given her back a decent bit of her vision, scrolling dizzies her; moving text strains her eyes. When she scans over a page, not all the letters register right away. She often has to skim words and guess what they are based on the context. Science and math are even tougher: “I can’t look at the beginning of a number and guess what the rest is going to be,” she told me. “My nightmare is asking me to read, letter for letter, a paragraph of gibberish.”

Diana has to put far more energy into her education to maintain her top-notch GPA this year, and she’s exhausted all the time. She hasn’t always felt that the staff at her school understand the toll remote learning has taken on her health. She recalled telling one teacher that the lecture slides in class were too small to parse—a complaint that was met with a shrug: Well, I can’t make them any bigger.

Even before the pandemic, Diana’s parents had repeatedly entertained the idea of moving her to a school that might make more accommodations for her visual impairments. But Diana loves her friends. She feels appropriately challenged by her classes; she has designs on a career in patent law. Now, the headaches, nausea, and fatigue are chipping away at her mental health. And many social interactions—the psychological bandages that once held her education together—have atrophied and disappeared. “If we’re not mostly in person, without having to be on Zoom, by next year,” Diana told me, “I think I’m going to lose it.”

Pombar, Diana’s pediatrician, told me that most of her patients have had an absolutely miserable year. Some kids have been skipping routine immunizations. Others have retreated into unhealthy habits, spending eight to 10 hours a day playing video games. Many, like Diana, have seen their mental health begin to crack and crumble; Pombar has had to send several patients to the emergency room as a last resort. A few of her patients gained 30 to 50 pounds in just a couple of months, and are now teetering on the edge of morbid obesity. “That’s something that will kill kids silently,” she said. “An obese child is a very sick child, but nobody’s talking about that.”

The power of being a pediatrician, Pombar told me, is being able to intervene early—to prevent health problems before they appear. That all fell to the wayside while the country descended into crisis. “It felt like you were at war and you had to choose which battles to fight,” Pombar said. “We’re now paying the price of all the things we pushed.”

The psychological losses are even harder to nail down. Allison Agwu, a pediatrician at Johns Hopkins, told me that it will take a long time for researchers to fully capture what America’s youth have lost to the pandemic. It’s been a year “devoid of normalcy,” she said, and adding up chaos during a crisis isn’t easy: “Which part is the virus? Which part is society?”

Diana, like many others, can’t pin her problems to a single inflection point. The entirety of the pandemic, this extended interruption to normalcy, is catching up to her in bursts.

An only child, Diana is close with her parents. Their home is spacious enough that it easily accommodated her brief isolation when she tested positive for the coronavirus at the end of February. She practiced her bass, binge-watched Criminal Minds, and took her meals on trays.

But even now that her tussle with the coronavirus is over, Diana doesn’t feel terribly liberated. Her world remains shrunken: Her home has, for more than a year, been her classroom, her entertainment center, her all-purpose nexus for existence. There is nowhere to escape to. She misses taking trips to Chinatown, and singing Disney songs with her friends. She misses sitting on her school’s campus with her classmates, filching grapes and crackers from their lunches.

Diana is young for her grade, so many of her friends have already signed up for their COVID-19 vaccines; she’s not yet old enough. “I am forever salty about this,” she told me. (The Pfizer-BioNTech vaccine, which is currently cleared for people age 16 and up, will likely soon be green-lit for kids as young as 12, almost certainly before Diana’s birthday in November.)

I asked Diana how long the pandemic will stay with her. Years, she predicted. The 13 months that COVID-19 has consumed represent most of her high-school experience so far, and nearly a tenth of her life. She’s still processing the emotional toll, she told me—the misery, the exhaustion, and what the past year will mean for her future. “I’m very tired,” she said. “I don’t know. It has genuinely messed me up.”