Young People With Long COVID Share Their Experiences

Young long-haulers say their lives have been turned upside down.
Rear View Of Woman Looking Through Window At Home
Aneta Pucia / EyeEm

Editor’s note: The sources interviewed for this story asked to only use their first names to protect their privacy.

Heather ended up in a psychiatric hospital. Ravi stayed in bed 16 hours a day. Gabrielle doesn’t know if she can ever become a mother since she can no longer take care of herself. Adrienne’s family doesn’t believe she’s sick.

When considering the lives that have been lost to COVID, the numbers tend to focus on people who have been hospitalized or died from the virus. But there is a growing contingent asking to be counted and heard: COVID long-haulers. The symptoms of “long COVID” include muddled thinking, headaches, muscle pain, and fevers. According to the Centers for Disease Control and Prevention, these effects “can last weeks or months after first being infected.” 

Long COVID can even strike those who have had “mild” or asymptomatic cases of the virus. Although the data varies widely, some studies indicate about 10% of cases will result in long-COVID symptoms (with some studies suggesting the prevalence as much higher and others lower). Some of the long-haulers are young people who were told they faced little serious risk from the virus if they didn’t have preexisting conditions. Teen Vogue speaks to several young long-haulers who say their lives have been turned upside down.

Ravi’s first symptom was fatigue. Next, he lost his sense of smell and taste — and didn’t regain them for months. To go from being a healthy, active 22-year-old to spending the majority of his day in bed was depressing, he says. “I [had] lived as someone in their early 20s does,” he recalls. “I didn’t pay much attention to my body. Then, to suddenly fall very ill and not get better… it felt like my life had been taken away from me.”

Before COVID struck, Ravi was a graduate student studying global affairs. Now he’s on medical leave from his program. With the intense fatigue came the inability to do things he loved, like seeing friends, reading, and playing the violin. As weeks of COVID symptoms stretched into months, he tried to figure out how to live with the illness that has become his constant companion. His once expansive dreams have dwindled to one sincerely held hope: to get better. “Even a 40-50% improvement would mean so much,” Ravi says. “If I could read, date, exercise — that would mean so much to me after they’ve been taken away for the last 10 months.” 

Ravi is making small strides. He says the number of hours he spends in bed has dropped from 16 to 13, and he’s able to practice the violin for short amounts of time. But mostly, he’s hoping to heal.

Heather, 17, doesn’t feel very hopeful — at least, not about getting better. Instead, they feel resigned to what they say feels like having a cold every single day. They’re learning to manage their illness better. The one hope they do have is that people will come to understand the risk long COVID poses.

Between their long-haul symptoms and the stress of online school, Heather fell into a depression. The straight-A student was losing motivation. Constant fatigue made sitting through hours of remote classes feel exhausting and overwhelming. After a suicide attempt, episodes of self-harm and suicidal ideation, Heather went to a psychiatric hospital four times in the span of seven months. 

Heather's mental health is better now, thanks to a combination of therapy and medication, but physically, they haven’t been the same since they contracted COVID in the spring of 2020. And with the return to in-person school, they worry about showing symptoms in front of other students, or having to hear from peers who spout debunked conspiracy theories, such as cell phone towers being the cause of the pandemic.

For Adrienne, doubts about her condition come from within her own family, who she calls “anti-vax.” “My family doesn’t really believe in what’s going on with me,” she says. “It’s irritating, because I want to keep them safe… but they’re not willing to listen to anything about COVID or the effects it might have.”

After catching COVID in the spring of 2020, when she was 23, Adrienne was laid off from her job and went to live with her family. She struggles with long-haul symptoms daily, but tries to avoid talking about it with her family. Sometimes, though, she has no choice, like when a family member lights a scented candle, which irritates the asthma she has developed post-COVID. She says she asks them not to use the candles, but they tell her to suck it up: “I have to hide in my room and try to put a towel underneath the door to keep the smell of the smoke out.” 

It’s not that Adrienne wants her loved ones to be fearful, she just wishes they understood what the potential long-term ramifications of contracting the virus can be — and that they empathized with her situation. Two years after getting COVID, she worries she’ll have asthma and breathing issues for the rest of her life. She spends time trying to secure appointments with over-scheduled pulmonologists to fill her inhaler prescription. 

A friend recently told her she uses Adrienne as a warning for other people to urge them to get vaccinated: If someone as healthy and young as Adrienne can be affected, the friend says, anyone can be. Adrienne is conflicted about being used as an example: On one hand, if it gets people vaccinated, that’s good; on the other hand, she doesn’t feel great about being reduced to a scare tactic. “I feel like… I’m this sad little object,” she says. “It’s bad, but it’s not that bad. I still have a life. I’m still a person. I’m not just an example.”

Jim Jackson, a doctorate of psychology and therapist who specializes in chronic illness and runs long-COVID support groups on Zoom, says acceptance is the biggest hurdle for people who find themselves chronically ill. “People conflate acceptance with resignation and giving up,” he says. “It’s not that at all.” Instead, Dr. Jackson says, a healthy perspective is one that recognizes: I can be different than I was before and still find a way to have a meaningful life. I can still do meaningful things even if they’re not the things I did before.

Teen Vogue attended a recent support group Dr. Jackson hosted on a Thursday morning. In 16 tiny Zoom squares, long-COVID patients, ranging in age from early 20s to 70s, spoke about their struggles. In one square, a woman was laying on her bed with a hood over her head; in another, a married couple sat side by side. Jackson opened the meeting by asking a simple question: “How are things unfolding?” A man shared that his father is in the hospital and visiting him has been triggering because it reminds him of his own hospitalization for COVID. Another attendee’s voice was colored with exhaustion, saying, “I never thought this would be my life.” Someone else weighed in: “It’s hard not to know if you’ll ever get better.” Another woman said she has good days and bad days, then stopped to correct herself: Sometimes she has good mornings and bad afternoons. Another attendee added, “It’s like a game you play every day when you wake up.”

Dr. Jackson made sure to call on people who hadn't spoken and asked if they want to share. He said he was sorry for their struggles and posed sensitive follow-up questions. He explained Maslow’s hierarchy of needs, which holds that basic physiological needs must be met before higher-level growth can occur. But the biggest benefit of the support group seemed to be just being in the company of other people who are going through the same thing as you are.

Since long-haul COVID left Gabrielle housebound, sometimes she finds herself wanting only to talk to other chronically ill people. “They’re the only people that get it,” the 27-year-old says. Her life — once so expansive, full of work, travel, and plans to learn to drive a car and visit new countries — has shrunk. Now she only has the energy to deal with the present. “I can’t see what’s happening tomorrow or next week or a few years down the line. I can’t see if I’ll ever have kids because I can’t fully look after myself anymore. Everything feels futureless. And I think that futureless-ness is hard for people who aren’t sick to understand.”

If you or someone you know is contemplating suicide, call the National Suicide Prevention Hotline at 1-800-273-8255.

Want more from Teen Vogue? Check this out: The CDC Thinks Disabled People Like Me Don’t Matter

Stay up-to-date with the politics team. Sign up for the Teen Vogue Take