FILE PHOTO: COVID-19 booster vaccine clinic in Lansdale

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DADO RUVIC

The Washington Post

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For The Washington Post

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Maria Rodriguez, 57, originally from Honduras, visits the grave of her husband, 72-year-old, Javier Ramirez Reyes, who died from covid-19 in January of this year. She and her family regularly visit his grave at All Souls Cemetery in Germantown. He had only received a single J&J shot. They were married for 17 years. The family lives in Gaithersburg, MD. The Omicron variant of the coronavirus infected people across race, class and geography. 

Maria Rodriguez, 57, originally from Honduras, visits the grave of her husband, 72-year-old, Javier Ramirez Reyes, who died from covid-19 in January of this year. She and her family regularly visit his grave at All Souls Cemetery in Germantown. He had o..

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In many countries around the world, the hope is that the worst of the coronavirus pandemic is over. People have stripped off their masks. Quarantine rules <a href="https://www.washingtonpost.com/health/2022/08/11/cdc-coronavirus-recommendations/" target=_blank>are vanishing</a>.

But three years in, there is still no standard test or treatment for post-covid conditions. Millions suffer from unexplained symptoms that many fear will far outlast the pandemic: unrelenting fatigue, memory loss, chest pain, diarrhea and boomeranging <a href="https://www.washingtonpost.com/health/2022/02/21/covid-cardiac-issues-longterm/" target=_blank>heart rates</a>.

Data collected in June by the U.S. Census Bureau and analyzed by the National Center for Health Statistics <a href="https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2022/20220622.htm" target=_blank>showed that</a> nearly one in five Americans who developed covid-19 still have long covid symptoms.

“Globally, no one understands what’s going on,” said Laurent Uzan, a French sports cardiologist who treats younger people with long covid. “We don’t give people a miracle cure. It’s a real war for them, daily.”

To understand how people around the world are coping, we invited readers to share their experiences with long covid, which the Centers for Disease Control and Prevention defines as a <a href="https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html" target="_blank">chronic condition</a> in which symptoms appear for at least four weeks after the initial infection.

How long covid could change the way that we think about disability

Nearly 400 people from the District to the Philippines told us how long covid has impacted their lives. We heard from a nurse who said he was fired when he could no longer work, a single mother of five who struggles to sleep, a former drill sergeant with tremors and many others. Each person experienced a unique kind of suffering, but their stories shared common themes of isolation, fear and feeling left behind by health systems, employers and friends.

Here are five stories from survivors with whom we spoke over several months. These interviews have been condensed and edited for clarity, and in some cases translated into English.

Carolyn Van Houten

Sherene Magana Cruz, Melbourne, Australia

The 51-year-old nursing home worker contracted the <a href="https://www.washingtonpost.com/coronavirus/" target="_blank" class="contextual_link">coronavirus</a> in July 2020 and spent weeks in intensive care. She is one of 200 critically ill patients being studied for long covid. Australian clinicians say she’s unlikely to ever recover fully. She’s back at work, but only one day a week, and she’s struggling to pay her bills. Her medical treatments, including weekly physiotherapy sessions funded by workplace insurance, are about to run out.

I work in aged care, where a resident was the first to come back with a positive case. The whole facility went into lockdown. I was an activity assistant, but it didn’t matter. It was all hands on deck. We became carers, kitchen hands and laundry assistants. We did whatever we could to help.

By the time I got confirmation that I was positive, I was already in the hospital. I couldn’t walk. Not even a meter. I fell to the floor at home, and my son called the ambulance. They told me that my lungs had a lot of fluid in them, and they needed to put me into a coma.

I was exhausted, so I just took it on, like, “Okay, no worries,” not realizing that I might not come out of this. The hospital called my husband five days later to say to prepare for my death because nothing was working. That was July 24, 2020. I woke up on Aug. 9.

I’m still having a lot of flashbacks and post-traumatic stress. My illness hit my daughter really bad, to the point that she tried to commit suicide, twice. It’s not just a single person’s suffering, it’s the whole family. My son contracted covid in late July, and he was scared to tell me.

There’s still just so many things that are wrong. I used to be that mum in the crowd that screamed really loud at the concert when their kid was up onstage. I can’t even do that. My throat keeps cramping.

All the pain, physical pain, is inflammation, in my feet, in my hips and in my shoulders. I’ve put on so much weight, not being able to go exercise. A friend asked if maybe losing some weight would fix my condition. I feel embarrassed. I feel like I’m one of my aged-care residents. I feel like my body’s aged 25 years.

I don’t have private health coverage, but because I contracted covid from work, I was covered. But it’s all a process. I have to do a doctor’s review every three months. I’ve got to fight to prove that I need massaging regularly because my muscles are very weak.

I’m just tired. Tired of proving to people. It’s not just covid. They have to understand that anyone that has been in a coma for a long period of time has muscle atrophy.

If you only knew me before. I was this superwoman, carrying heavy grocery shopping bags. Now I need to use a walking stick or frame. I miss jiving. I always had this rhythm. You know, I could do all styles of dancing, including tap dancing.

I had a very good memory. I would remember appointments, I would remember people’s birthdays, and I wouldn’t need to write anything down. Now I can’t remember things. I’ll be wanting to tell you a word. And I know the word. I see the word. I just can’t get it out.

The 48-year-old stay-at-home mom was diagnosed with covid-19 in March 2021. Her condition quickly worsened, and she ended up in the intensive care unit. A year and five months since her initial diagnosis, she still needs nearly a gallon of oxygen a day to help her breathe. Her primary care doctor diagnosed her with long covid symptoms, and she hasn’t been told “when they’ll go away or even if they’ll go away.”

On March 29, 2021, I went to the hospital because I was feeling bad and found out that I had covid. I started to deteriorate, so they transferred me to the ICU. I was sedated, and a tube was put down my throat to help me breathe. The last thing that I remember is the nurse telling me everything was going to be okay.

On my birthday, May 25, my family was told that I wasn’t going to make it, so they decided they were going to let me go. God, however, that day had different plans for me. The day they came in to say their goodbyes, I started to respond.

On June 13, I just woke up out of the blue. I still thought it was March or April, because I don’t remember the time in between. I was off my ventilator by July. I had to learn to walk again because I was in bed for so long. I was discharged on Aug. 23, 2021.

I have lung issues. I’m still on oxygen. I had depression and insomnia before covid, but it’s 10 times worse now. I also have kidney issues. Basically, covid messed with all my organs. My whole body was starting to shut down. My family doctor classified me as having chronic obstructive pulmonary disease, which is considered to be from covid, and I see a pulmonologist for that.

Sometimes I sleep maybe an hour or two, if that. I just have the fear when I go to sleep that I’m not going to be able to breathe, because of everything that I went through. My body hurts all the time.

My 22-year-old daughter Kailey is helping me full-time, and I have an aide that comes in during the day, too. Fortunately I have Medicaid, so they have paid for everything. I’m fortunate that I don’t have that big bill over my head like some people.

Looking back, I’ve learned not to be stubborn, to go to the hospital when you first get sick. I waited two weeks because I thought it was my asthma acting up. Go to the hospital and get vaccinated. I was not vaccinated before I caught covid, and I’m vaccinated now.

I know a lot of people were scared to get the vaccine, but I would tell them it’s not a hard thing to do. I was scared because I didn’t know how I was going to react to it. You can take Tylenol for a fever. If you get covid and you get put on a ventilator, there’s a chance you’re not going to make it. I was one of the fortunate ones who made it.

Before Matthieu Lestage first got covid-19 in October 2020, the 44-year-old former drill sergeant led an active life with his wife and two children. He managed a fishing gear store, wrote columns, and ran a YouTube channel about nature and fishing. Nearly two years later, and after a second infection in July, he still struggles with debilitating symptoms that have left him unable to return to work.

He advocates for long covid patients as a member of the nonprofit Apresj20, meaning “after the 20th day” of the disease. Because he is enrolled in the first post-covid medical study in France, Lestage says has had a “less chaotic” experience navigating the health system than others. He is recognized by social security as a patient with chronic illness and many of his treatments are reimbursed. His salary is guaranteed by the state until October 2023. When that help runs out, he is not sure how he will cope.

At first, covid-19 started as a simple cold, a runny nose, a tickle in my throat. I’m physically and mentally pretty strong, so I figured it would go away. Instead, I was extremely tired. I slept 18 to 20 hours a day and had no sense of taste or smell. I had a headache more powerful than a migraine, the kind of headache that encircles your head, that prevents you from being able to think or act. I spent my time on the couch.

I got up one morning and thought I felt better. There were a few dirty dishes in the kitchen and I wanted to clean them. That’s when everything went wrong. My heart rate climbed, and I could feel it beating strongly in my chest. My legs felt like they were breaking, I had no strength, my head was foggy.

My wife called 911 and we left for the hospital on suspicion of pulmonary embolism. I almost died in the car. Emergency workers revived me on the side of the highway. At the hospital, a doctor came to see me and told me he was letting me out, that I was young, in very good physical shape, and that while it might be complicated for the next few weeks, I was going to be fine.

But it’s been 22 months of this. I have neurological problems. I have poor control over my concentration and coordination. I haven’t been able to drive. I have brain fog. I know that I can do things for roughly an hour and a half a day, and after that, nothing. I have tremors whenever I do anything.

Before I became the manager of a fishing gear store, I was a drill sergeant in the army. I did winter and summer commando courses. I jumped into the void with just a rope behind my back. I walked 100 kilometers in three days and it was no problem for me. I motivated thousands of soldiers to go through their basic training. And today I’m yelling at myself, like I used to yell at them, to keep going.

But it’s taking too long, it’s too complicated. My morale has taken a hit, because everyone is telling me they don’t know. They have theories but no certainties. I really wanted to keep moving, so every other day, I walk. Now I manage to walk 2.6 kilometers and have to stop. I have a wheelchair to help with my mobility.

It’s very tough, if only for the ego, to feel incapacitated and handicapped. I get fewer tremors, but they are still there when I do activities. I speak longer and better. And 2.6 kilometers is still much better than 20 meters. I know full well that my life will not be like before. But I’m lucky to have a second chance. I have to live it. I can’t give up.

Phil Hedayatnia knew he had worked an unhealthy amount for his technology firm, a lifestyle that didn’t help when he tested positive for the coronavirus in September 2020. During his first year of recovery, the 24-year-old Cleveland native, who used to bike for hours near the Erie Canal, couldn’t spend more than half an hour working out without difficulty breathing, his most severe long covid symptom. This problem persists to this day, leaving Hedayatnia ping-ponging between normalcy and severe breathing issues, especially when the air quality is bad. The only coping mechanism he has found to be effective is taking time off work and letting his body rest.

I was on vacation with friends when we came down with covid. Most of my friends had a pretty easy go, two or three days of flu-like symptoms. But that was not my experience at all. I didn’t lose my sense of taste or smell, nor did I even have a fever. The virus hit my lungs almost immediately, and within 12 hours, I could not breathe.

I stayed this way for the next six days. My blood oxygen level started to drop, and I saw stars whenever I took more than a few steps. Walking to the shower was hard, as was keeping down food. When one is submerged underwater and can’t breathe, the feeling of being trapped triggers some dark stuff.

Without question those six days were the most painful period of my life. Even though my symptoms miraculously cleared up on the seventh day, I later sought therapy to process what happened.

I spent four weeks in my parents’ basement when I returned home, to make sure all shreds of the virus were out of my system. But my condition took a sudden turn for the worse one month after that. When I woke up suddenly one morning with labored breathing, I went to the Cleveland Clinic, where a doctor told me I might have long covid.

I was given no advice other than general tips on how to stay in shape and adopt a balanced diet. And I then had to fight for months to have most of my nearly $100,000 medical bills covered by insurance. I am, however, still grateful for the care I received.

Compared with many other long-haulers, I am lucky because I felt supported and heard by my doctor. Through online support groups, I’ve read stories from people who say their ailments were dismissed and their health worsened. At least I don’t have to deal with that problem.

It’s sad knowing that my life won’t be the same because now perhaps one day of the week I have to tell my colleagues, “Hey, I can’t make it to work today because I can’t breathe today.” But the one silver lining from this ordeal is that it brought me closer to my family, teaching me not to take them for granted.

André Saravia, 29, was working as a nurse in the covid-19 unit of a hospital when he was infected a second time in December 2020. His first infection a few months earlier was mild, but his second one sent him to the ICU and left him with symptoms including brain fog, fatigue and an extremely low heart rate. He was infected for a third time in March 2022 when he tried to resume work.

I was working with these symptoms for around six months until I collapsed, with multiple organ failure, respiratory distress, difficulty breathing and lapses in memory. I was hospitalized again. New neurological and motor symptoms, like intense burning and prickling sensations and pain similar to fibromyalgia, appeared and ended up disabling me. Every few days or weeks, I have intense episodes of pain where it hurts to move even a little.

I was in bed for a few months, and I couldn’t move due to the level of intense fatigue I had. I needed help from my brother or boyfriend just to get out of bed. My employer fired me over my long covid symptoms. Today, I am engaged in a lawsuit against them. My health has deteriorated. My quality of life has diminished.

My life before covid was totally different. I did yoga, swimming, skating. I’ve lost all that. I still haven’t been able to work. With the help of medication, my quality of life has improved a little, very little. But something is something.

I feel abandoned. Not just by my former employer, or by the system itself, so much as by my country and society. You’re part of society only if you’re productive. If you’re not working, you don’t have medical care, you don’t have anything to eat, you don’t get help.

I have now found an informal job related to my profession, doing private nursing care. It’s not ideal for me, but it’s what my body allows me to do. I need to make money to keep paying for the medical expenses that living with long covid requires.

I have written to the president, lawmakers and other health policymakers, and none has been willing to help me. The media in Chile speaks little about long covid and covid-19. Chilean society does not believe in long covid, and they are already fed up with the pandemic. I just try to move on with the pain. I unfortunately have no other option.

Carolyn Van Houten, 31, a Washington Post photographer and the author of these photo illustrations, was following President Biden on the campaign trail when she got a mysterious pneumonia in February 2020. A few weeks later, after getting back to work, she became sick with covid-19 and never fully recovered. She continues to deal with fatigue, migraines and shortness of breath. In her case, covid triggered some autoimmune diseases that she will live with for the rest of her life. Her experience informed these illustrations, which show contrasting “before” covid photos on the left, “after” covid photos on the right and symptom lists in the middle, illustrating how symptoms are now central to the life experiences of long-haulers.

Carolyn  Van Houten 

New York University, BS in Media, Culture, and Communication and BA in Print Journalism 

Grace Moon is the global audience editor at The Washington Post's Seoul hub. Prior to joining the Post, she was a freelance reporter based in Seoul. 

Grace  Moon

Forbes 30 Under 30, Media & Marketing Europe, 2020

Gracie Awards, Original Online News Programming, 2020

MHP 30 To Watch: Young Journalist Award, 2019

Georgetown University, Bachelor of Science in Foreign Service

Annabelle Timsit is a breaking news reporter for The Washington Post's London hub, covering news as it unfolds in the United States and around the world during the early morning hours in Washington.

Annabelle Timsit

Asia 2000 annual travel award for journalists reporting in the Asia-Pacific.

Massey University, BA in Social Anthropology and Journalism

Rachel Pannett joined the Post's foreign desk in 2021 after more than a decade with The Wall Street Journal, where she was deputy bureau chief for Australia and New Zealand.

Rachel Pannett

Arizona State University, BA in Journalism and BA in Business

Bryan Pietsch is a reporter covering foreign affairs on the International desk, based in D.C. He was previously based in Seoul, where he was the inaugural reporter in The Post's news hub there.

Bryan Pietsch

Yale University, BA in Ethics, Politics and Economics

Amy Cheng is a breaking-news reporter for The Washington Post in its Seoul hub. Before joining The Post in October 2021, she worked as a news producer for NPR in Beijing.

Amy Cheng

Pulitzer Prize for Explanatory Reporting, 2°C: Beyond the Limit Team, 2020

Robert F. Kennedy Human Rights Award for Domestic Photography, 2019

Overseas Press Club's Robert Capa Gold Medal, 2019

Pictures of the Year International's Newspaper Photographer of the Year, 2016

Forbes 30 Under 30 in Media, 2021

Society for Environmental Journalism Explanatory Reporting Award, 2ºC: Beyond the Limit Team, 2020

AAAS Kavli Science Journalism Awards, 2ºC: Beyond the Limit Team, 2020

National Press Photographer's Association International Photographer of the Year, Third, 2023

The University of North Carolina at Chapel Hill, B.A. Journalism

Carolyn Van Houten is a staff photojournalist at the Washington Post. She was a recipient of the Overseas Press Club's Robert Capa Gold Medal, RFK Human Rights Award, and was named one of Forbes 30 Under 30 in Media. She was on the team that won the 2020 Pulitzer Prize for Explanatory Reporting.

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