As the United States closes in on nearly 8 million coronavirus cases, thousands of people are still suffering from debilitating symptoms months after they contracted the virus. COVID-19 has upended their lives, changed their bodies, and made it difficult to complete everyday tasks or, in some cases, hold down jobs. A CDC study from this summer found that 1 in 5 people aged 18 to 34 who tested positive for COVID-19 had not recovered their health after a few weeks. Some may be chronically ill and need long-term care. Months into the pandemic, there’s still no real treatment plan for these patients and many say their own doctors, friends, family members — and now their president — continue to downplay what they are going through.
Over the past three months, BuzzFeed News has spoken with more than 100 of these long-haulers as they searched for help and recognition. In the beginning, many said they felt very much alone, finding solace in online support groups. As doctors learned more about the virus, it became apparent that the narrative that the coronavirus largely bypassed young, active people was not entirely true. Many previously healthy long-haulers describe a common set of symptoms: fatigue, recurring headaches and fevers, trouble breathing, and a persistent "brain fog" that makes it difficult to remember things or focus.
When President Donald Trump tested positive for COVID-19, many long-haulers held their breath: If the country watched their leader confirm that the virus was serious, their plight might receive more attention. But then Trump took off his mask, told people not to let COVID-19 dominate their lives, and continued to dismiss the virus that has now killed more than 217,000 Americans. On Monday, Trump returned to the campaign trail, telling an audience in Sanford, Florida, that he felt “so powerful” that he would “kiss everyone in that audience.”
But young long-haulers in states like Vermont, Georgia, and California want you to know that the coronavirus doesn’t just dominate your life; it can completely change it.
Nicholaus Maiorana, 29
The hardest part about being sick like this is that no one gets it. I got better in May. Then I relapsed and everything fell apart. I was buying socks and underwear off Amazon because I didn’t have the energy to wash stuff. My veins have been bulging out, and some days I won’t be able to sleep for 24 hours, no matter what I do. Spending the last few months of my twenties in bed or housebound has been really hard.
I live in a more rural part of the country, and my doctor’s office isn’t really dealing with this. I’m exhausted trying to advocate for myself, exhausted trying to explain myself to friends and doctors who don’t believe me, so I finally relented and agreed to go on the antidepressant my doctors prescribed.
When I found out Trump got sick, I almost felt bad for him. He was not tweeting, hospitalized, and acting a bit humble and vulnerable for once. Obviously that did not last long. His staff and Secret Service members are at risk because of his ego. He was airlifted to a hospital and received amazing care. I did not — most Americans do not. Why is his life more valuable than mine? Then he mocks this illness that has ruined my life.
The most draining part of this experience has been the flare-ups; it’s a constant letdown to be moving forward and then backward. Some days I feel kind of good, and people notice that I am doing better. I usually relapse a few days later, and people are confused as to why I am not feeling well again. Prior to this, I drank and I smoked weed. I’m plant-based now and juice every day. The holistic approach is the only thing that’s really worked for me, but I miss being able to enjoy alcohol and eat food without worrying about it inflaming my body.
I have also experienced some humbling love and support from people I would not have expected and that makes me feel less alone. When I am really down, I think back to a few months ago when I could barely breathe, when it felt like I was suffocating or dying. I started doing this thing, when I was having a really hard day, I would breathe in at the same rate and count. At first, I could only make it to three. Then I got to 26. Those little mile markers really kept me going. Now I am at 36. You don’t realize how much those small moments, when you see yourself reclaiming your body, how much those matter.
Jessica Ramsay, 37
The hardest part is when my daughter asks if her mommy is ever going to feel good again. I don’t know what to tell her, because I am asking myself the same question. I feel like I no longer have control over my own body and will never be able to play catch or ride my bike with Sadie, my daughter, again. My heart rate still shoots above 200 for no reason, and there were weeks where I couldn’t stand while washing my hair and I would have to sit down in the shower. When I was able to cook, I had to put a chair in front of the stove because it was so exhausting. I’m a single mom and I am used to being the one who takes care of her. I was working 60 hours a week before and now I can do 20 hours if I am having a good week and that's about $250 — it’s hard to survive on that.
I try not to complain or be negative, because I’ve already seen how this has changed my daughter. I couldn’t shield her from all that was going on in the world, all the fear and sickness, because it’s been in her house. She’s 12, and she doesn’t want to go out to eat. She doesn’t trust other people, where they’ve been. She’s had to fend for herself and take care of me, help cook me dinner. I was trying to oversee her education, but she’s done most of it on her own. My mental capacity isn’t what it was. She would show me something, and I would read it five times and I still couldn’t understand it.
I was never someone who went to the doctor, and now here I am, the sickest I have ever been in my life trying to advocate for myself and no one is listening. The first time I was admitted to the hospital I felt so badly, I was writing letters to my daughter saying goodbye. The system is not prepared to help people like me, COVID patients who never got better. With COVID slowing things down in hospitals and doctors’ offices and our referral system the way it is, everything takes so long. I’m waiting for a cardiac MRI that I won’t get until November. I go back and forth between wanting to give up and then realizing I am the only one who will advocate for my own health.
I hate that Trump is trivializing his experience with COVID. This virus isn’t political, and you don’t choose to let it dominate your life. It’s infuriating for us long-haulers who are still struggling and are just looking for some recognition or help.
Sadie Ramsay on her experience: I’ve been helping my mom with chores and cooking. I like to make pizza and chicken nuggets. The other day I made her homemade mac ’n’ cheese and brownies for dessert — that’s my famous meal. I do the dishwasher and vacuuming and cleaning up my room and the living room. It’s hard for my mom to go up and down the stairs without her breathing being bad so I help her get stuff. It’s been sad seeing her that sick. I am scared for her health, and I just want her to be safe and I don’t want anything to happen to her. I don’t want to go back to school because it’s scary, knowing that the coronavirus is in there, but I learn more there than I do at home. I like to play outside and swim, but I don’t feel safe to go anywhere anymore. Even with a mask, because mostly other people don’t wear masks, which is dangerous. I’ve been spending a lot of time by myself. I’ve been drawing and I am trying to learn how to code. I don’t really tell my friends too much about my mom being sick. My mom is not able to do as much as she used to. That’s hard.
Emily Lucas, 21
Central New Jersey
Sophomore at William Paterson University
With COVID, one day you think you’re back to normal, and the next, you’re on the bathroom floor thinking you’re breathing your last breath. It’s been seven months, and some days, food still tastes so bad I’d rather just go hungry — even if I am starving. It’s hard to be motivated to eat most days, and I’ve been losing weight and hope. I still have chronic lung inflammation, fatigue, brain fog, and sensitivity to light, and I have been struggling a lot with depression. I went from working as a vocalist and being a music student to some days feeling like I was drowning in my own lungs. I had to move back in with my parents, and in April, I remember looking at my dad a few times and thinking, Am I going to die? I remember being scared to go to bed because I didn’t know if I was going to wake up. I fell really far behind in my classes and as a vocal major, and my notes aren’t the same as they used to be. It’s really hard to get that clear sort of sound and it takes all of my energy.
I am kind of at war with myself over how I feel about Trump getting sick. It’s his fault that so many people died — that part is true no matter how I feel. But because so many people, including myself, have had their lives and health ripped away from them, half of me is saying, “Good. I hope you end up the same way all of the people you murdered did.” Jesus says to love our neighbors and our enemies, so that’s what I’m striving to do. One thing is for certain though: To look someone in the face who almost died from a virus you failed to protect them from, who is now suffering from a chronic illness, and say “don’t let it control you,” that’s ignorant, incredibly offensive, and enraging. You don’t get to say “don’t let it dominate your life,” because you’ve never had it like we’ve had it. And you get the BEST medical care in the country. Money is no object. So don’t tell me that “it’s nothing” or “I’m faking it.”
At 21, I never thought I would look at and make it through life this way. So many people didn’t survive this and it makes me think, Why me? People don’t understand what this is like, why I don’t want to go outside. My friends are saying I am being selfish for not wanting to come hang out with them. My school has some in-person classes, and a lot of my classmates are back on campus. Even though I know it’s not safe there, I see all the dorm room photos and I am a little jealous. I miss school. I constantly think about if I am going to be a burden to the person I end up marrying someday, like dead weight. If someone would want me at all. But I always have faith. I tell myself that God doesn’t magically snap his fingers and suddenly you’re healed, there’s something to be done in the waiting moments. There’s a beauty to be in the struggle you are in. I tell myself that nothing stays the same, this won’t last forever, it can’t last forever. This is probably the number one thing that has kept me going all this time. I’ve gotten suicidal thoughts every now and again, as I’m sure so many others have too, but this quote has been the turning point of some of my worst moments: “Tomorrow will be different.” That alone has brought me so much hope.
Jacques Zelnik, 28
I was one of the 27-year-olds who were like, Oh, I’m young, this isn’t going to bother me. I played D-1 football at Tulane, didn't smoke, went to the gym every day, and I never really took time off from work. But then things got very real for me.
It started with a headache on Sunday, March 15, and by Monday afternoon, I was having trouble breathing and could hardly move. I started having to consciously remind myself to breathe.
By May I had stopped responding to Tylenol and then had to stop taking it because my liver had become enlarged. A test said I had the lungs of a 67-year-old. Once my fever finally broke, I really noticed the cognitive effects. Every day, sometimes multiple times a day, I get up to go do something or speak to someone, and I totally lose my train of thought and go blank for a while. It’s super frustrating for me and I give myself a hard time for it. I celebrated my 28th birthday in June, but it felt like I could be 80 years old. I have had to learn how to relive my life cognitively and physically.
Finding out the president had it was complicated. No one deserves to experience COVID but, after dealing with this for 205 days, all COVID has done is dominate my life, as I am sure it has the lives of everyone else who has gone through this. I am offended and, quite frankly, embarrassed on behalf of myself and for those who suffered through this and are not able to say something.
Being in a situation where you are living your life severely impacted with no answers, that’s not too behind from dying from this, that’s how I feel. People our age need to know that it’s not true that this doesn’t change you. This virus doesn’t care who you are or how old you are. I’m not even close to being back to normal. I don’t see myself ever being what I was, and that’s really tough. I haven’t noticed any improvements in my recovery since mid-August. It's still tough for me to do things like walk to the grocery store.
We can’t lose sight that people have “recovered” but are still dealing with these issues that no one knows the answers to and stop spreading the idea that if you don’t die, you will be fine. You can survive but still basically lose everything you have in your life.
Melissa Freeman, 39
Homeschooling mom, student, and cake decorator
I have heart damage and a neurological impairment because of COVID, and I’m still processing what that means for my life. I have five kids, and before I got sick, I was homeschooling three of my children while also finishing my undergraduate degree in business. But then my husband was laid off in April, and I took a job as a cashier at Walmart. I worked one day before I got sick.
The virus has continued to scurry through my body, touching and impacting every system. Sometimes I feel a weird burning sensation on my skin, with no redness or visual changes. Some days my vision is distorted to where spreadsheets look like zigzag lines, and when I read, words will rock and swing across the page. When I type, my fingers hit the letters out of order and in the wrong quantities. I can't take two steps without forgetting what I'm doing. I write everything down as soon as I think of it — or the thought will be lost. I get words mixed up and can't remember what things are called.
One day, my daughter was telling a story to her brother and said, “Mom did…” I stopped and tried to picture who her mom was, then I realized, That’s me! I’m her mom!
My strong, powerful, agile body is also gone. It's as though I am 15 years older. I used to love gardening, hiking, yoga, and playing pickleball with my kids. I’ve even done a couple triathlons and used work out almost daily. Now, sometimes my arms are so fatigued I have to switch arms to eat. It's as though I've been holding my arms out straight with two heavy books in each hand, and I can barely hold them up anymore.
There have been so many nights where I fought alone in the dark of night just to breathe. There have been many times where I want to fade away — to stop fighting so hard. So many people dismiss this as merely a flu, but this virus will rob you of the simple joys you once had. It will change your personality, your relationships, and very likely your employment.
America is failing. I am still in disbelief that a nation so advanced as ours lacks the proper ability to test and treat patients. There are so many cases that were never counted. I was never counted. I hope from President Trump's infection, we see a better distribution of initial care and high-quality aftercare. There are too many people currently left on the curbs to "wait it out" when there are treatments available that could address the many complications they're experiencing. We are becoming a society burdened with having hundreds of thousands of Americans like me crippled and disabled from chronic illness.
I have to continue to apologize daily to my kids that I can't remember things or help them as much as I used to. They're learning to live with a less-abled mother.
Amy Tekell, 36
Mission Viejo/Orange County, California
Project manager for a broadcast technology company
I just switched to long-term disability, which means my doctors think I may never get better and will need assistance for a long time. COVID has severely damaged my lungs and caused me to have a stroke. It’s hard to comprehend that I need a cane and a walker to move, when I have the energy to move, and can sometimes only handle 10 minutes of a mentally stimulating activity, like sudoku. Days before I had symptoms on March 16, I felt the healthiest I ever have. I was so full of life, working 80 hours a week and loving it, and things at home were good. I now have been on oxygen 24/7 since April and I mostly stay in my bedroom on the second floor alone, except for my fiancé and roommates, because it’s so exhausting to carry my tank and my body up and down the stairs. Sometimes I look at the glass of water, and it's so heavy, I’ll just wait and get it later. Being so stationary has put me in a prediabetic zone, and because of my desire to do things a normal person would do, like the dishes, my doctor has me walk around my room back and forth 8 to 10 minutes a day and do one structured activity a day like a puzzle or holding and trying to read a book. And let me tell you, it's hard. Those eight minutes of walking every night — it's like watching a baby giraffe trying to stand for the first time. It's sad. How did I get here? And for my fiancé, I'm sure it's heartbreaking for him to see. The wedding I was planning is now nonexistent. I don't even know if/when we can get married now.
I've had moments I thought for sure I would die, and others wailing at the sky, Why did this have to hit me so hard and why can't I get better? I have had so much hate from people in my community and in my friend and family networks, who say negative things to me or about the virus in general. I've been called a "Russian Hoax sent to fear-monger."
So when they announced Trump had COVID, fear took over me. I wish no one to die, but I just had a feeling that he was going to suddenly recover and say it was no big deal, and some "miracle drug" cured him. Then not two days later, that is what happened. The entire time of COVID, I and many long-haulers like me have felt bullied by Trump's statements and backlash of Trump supporters. We are still barely mentioned by the executive branch and the CDC. This is a direct result of politics being put over people's lives. It's unchristian, and it’s deplorable behavior. I want nothing more than to work and do chores and to take care of myself, of the people in my household. But I can’t. This has derailed my life. I fear for my long-term health, my career, and my fiancé's career. Will we still be able to get married? Will he be able to find another position while we are quarantined? What will the long-term damage be? These are very real fears. How can this NOT dominate my life? ●