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Documentary Series Shows Snapshots of Life with Long COVID

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Courtesy of Morgana Wingard

Key Takeaways

  • Humanitarian photographer and filmmaker Morgana Wingard is traveling the country to document the stories of COVID-19 survivors.
  • Many of her subjects are "long-haulers," people who experience systemic, debilitating, and varied symptoms even after the SARS-CoV-2 infection has cleared the body.
  • Wingard's project, the COVID-19 Survivor Diaries, allows survivors to share their own journeys to recovery.

In 2014, Morgana Wingard was living in Liberia, West Africa, when an Ebola outbreak overtook the country. As fear, myths, and misinformation spread alongside the virus, the photographer-filmmaker started chronicling first-person accounts from survivors to show the humanity behind the headlines and help curb the spread of the virus.

Six years later, when COVID-19 came to her new home in New York City, she implemented that knowledge again with the COVID-19 Survivor Diaries, a documentary series that captures the voices of COVID-19. 

Over the past year, Wingard and her husband have interviewed and photographed over 145 survivors of the virus. Their journey began in Brooklyn through social media and expanded to 29 states across the U.S. through an ongoing film project. As stories of recovery and hope transpired, so did stories of survivors who never overcame their symptoms and were left with residual scars: the COVID-19 long-haulers

“We count the people who have died, but It’s also important to remember the people who are still dealing with COVID—some for months—to ensure they get adequate care including treatment and research,” Wingard tells Verywell.

She says that survivors play an important role in an outbreak because they’re a familiar source that others can trust, and that we should use their stories to empathize, learn, and understand. 

“We’re documenting the stories for history so we don’t forget and we don’t repeat the same mistakes,” she says. 

Now, Wingard is sharing a look at her project with Verywell. In their own words, five people featured in the series explain how COVID-19 has altered their lives. (Excerpts taken with permission from COVID-19 Survivor Diaries. Interviews have been edited for brevity.)

What This Means For You

You can follow the COVID-19 Survivor Diaries series online, via social media, or in book form. The film series is currently in the works.

Ryan, 33 (Atlanta, Georgia) 

Day 266 of COVID-induced symptoms

Ryan

After finally feeling better from my COVID symptoms, I found another testing center 50 miles away. The result came back negative. I got another test the next day; it also came out negative. I was like, "Ok, according to science, I'm good." I felt relieved.

I went back to work, started teaching my cycling classes and boot camp classes as if nothing happened. About a week afterward, I could not breathe again. It felt like a teenager was sitting on my chest. 

I felt constant pressure. I couldn't catch my breath walking up a flight of stairs. It was like winded stars; you would see those little light things when you feel lightheaded. I knew it was not normal. 

I started to feel tired. I would teach one class and need to close my eyes afterward for a minimum of 20 minutes just to carry on my day. I got scared and paranoid.

We did an MRI, and there was damage to my lungs, which my doctor compared to a smoker's lung. When I got those results back, the world just crumbled in front of my eyes. I was like, "Oh my God, I have lung damage. Even though I never smoked a cigarette for a day in my life."

I had to use a nebulizer again, which I haven't used since I was 9. No one has any answers to this day. I still feel like I can't catch my breath. I still feel like I'm on the verge of an asthma attack any minute now. But there is no explanation as to why.

I have to ensure that my watch is always charged so I can watch my heart rate every second when I am teaching. If it gets too high, I have to stop and coach. 

The only workouts that I can do are barre classes, yoga, and Pilates, which have a very low impact on your heart rate, though mine still skyrockets to 160. 

It's been 266 days. 

When you pass three or four months, the problems become neurological. I started to lose my balance. I couldn’t remember anything. My brain fog is terrible. I will be on the phone with my mom and forget who I am talking to. I will see my husband feed the dog dinner, but three minutes later I'll ask him if he fed the dog. Then two more minutes after that, I'll ask him again if he has fed the dog. It is almost like dementia, and it's frightening.

My hair started to fall out in massive chunks, so I had to shave it. I was never able to see my scalp before, but now my scalp is visible. I'll wake up in the morning sometimes, and I'll think, 'Is that dog hair, or is that my hair on my pillow?' It's terrible: It’s absolutely terrible because there is nothing you can do. 

Before you start finding people who have had it, you are on your own in your own world, being gaslit by society like it's fake. People need to stop politicizing it. The virus is not political. It doesn't care if you're old or young. I am 33, but now I feel like I have the lungs of a 75-year-old.

Donna, 56 (Springfield, Virginia)

Day 367 of COVID-induced symptoms

Donna

Ambulances and fire trucks arrived that night around 9:30 p.m. I sat downstairs in the pouring rain. The medics stood far away shouting, "Ma’am stay there. We’ll come to you!" It felt like I had the plague or something. I watched them suit up. Then, I crawled my way up the steps into the ambulance.

That evening, I tested positive for COVID-19. That night in the hospital, sitting there, I feared I was going to die.

For two months after that, I went back and forth to the ER four times, getting COVID-19 tests and blood work, CT scans, EKGs, etc. They found out that I had blood clots, a pulmonary embolism, and tachycardia. I lost my sense of taste and smell, had fatigue, severe headaches, ringing in ears, joint aches, night sweats, rashes, insomnia, hair loss, and breathing issues. My heart rate would jump to 170 or 180 out of the blue. It was a roller coaster. One day I felt good; the next day, I would crash suddenly. It was like a big wave slamming in my face and knocking me back down. I just couldn’t get my health back!

This doesn't compare to anything catastrophic that I've experienced in my life. This was the worst thing I’ve been through. I never had my life threatened like that. I never thought it would be me.

I didn't see the light at the end of the tunnel in the beginning. 

Once you go through an experience like that I think it puts life into perspective for you. I've always been a big advocate of the fact that "you only have one life," but until you brush that surface of maybe dying and being that scared, you start to really believe it. My outlook on the future has changed.

Chris, 41 (Lake Placid, Florida)

Day 330 of COVID-induced symptoms

Chris

As soon as they told me I tested positive for COVID in May, my whole world dropped. I was in pain like never before. I was so scared I would die. One of the worst parts of being in the hospital with COVID is hearing people screaming. 

I thought I was getting better, so I went home again. After a week or two, I started having trouble breathing again. I was lying on my stomach, and my chest started feeling like I was underwater, so I went back to the hospital. It seemed like almost every other day I'm back in.

I told the doctor there that my stomach was hurting really bad, and he started telling me that I'm lying and I'm making stuff up. When you have COVID, it intensifies everything, and it causes stuff in your body to hurt that they can't figure out.

At that point, I'd already had it for six weeks and lost 50 pounds. They told me that from losing so much weight that I was losing muscle mass. I'm really weak. I can’t really walk. If I walk 10 feet, my heart rate jumps to 150-160. I tried to walk to the bathroom one time, and within five seconds, my oxygen dropped from 100 to 78%. I found that when it drops to 85, people usually pass out, and when it drops to where mine dropped that day, you can die.

After two or three weeks, I got out. They finally told me I was COVID negative on July 17. So from May 26 to July 17, I had COVID. I went home, and within a week, I ended up back in the hospital. I was having trouble breathing again. They told me that I was still positive for COVID, and that’s something I did not understand. How was I negative, but then positive again? 

I leave. I go to the hospital again. I test negative. I kept going back and forth. I realized that I couldn’t get back to normal. 

They went ahead and did an EGD and they found I had erosion on my stomach, damage to my stomach lining, and inflammation on my stomach because I now have chronic gastritis. They did a CAT scan and an X-ray and told me that my lungs were like shattered glass from COVID.

They started searching for a rehabilitation facility to put me in because they felt like I needed further treatment. After eight days, they found this other place, and they transported me here. This is my third week being here. They have a better understanding of people that deal with COVID.

I've been doing physical therapy four or five days a week on the days I can actually do it. I've been in constant pain, and I've been on oxygen since I've been here. I'm the youngest person here. My roommate before this was 90. 

Now it's just kind of like a waiting game. They're trying to get my endurance and stuff up and just continue to treat me.

Gail, 46 (Atlanta, Georgia)

Day 370 of COVID-induced symptoms

Gail

I have a very vivid memory of the beginning of the illness. I was coming out of a Kroger, and I got in the car, and I had the worst headache of my entire life. It felt like a sinus headache and a migraine combined. Then I had this huge sneeze. I didn't think anything of it. That was the beginning. 

I noticed that my cognitive processes and speech patterns changed and got interrupted. I had difficulty forming words. Neurological issues were the worst part of it. I got scared when I started doing things like someone would do while having a stroke. I combined phrases. For instance, in the backyard, I would tell my dog, “Let's go upside.” I usually go upstairs to go inside. To say this, I combined both words like the wires in my brain crossed.

One day I lay down for the night; within seconds, I couldn't breathe. My chest tightened, and my heart started racing. I was gasping, trying to get air, and I couldn't get air, and it scared the living daylights out of me. I got out of bed. I still couldn't breathe. I probably should have called an ambulance at that point. I don't know why I didn't. I'm a yogi, so I started doing pranayama breathing. I don't know if that is the reason that it went away. That incident really shook me. I get a little emotional about it, as it was the first time that I've ever wondered if I was going to make it. 

The recovery was slow after that. And when I say ‘recovery,’ I mean I was not tired after making a cup of tea. The fatigue was real. Then, the neurological symptoms started, and the irritability was unreal. My nervous system is not the same. I'm more easily agitated and more emotional. I can't discuss charged topics as I can't manage my emotions the same way either. People would say things, and I would have this inordinate response, a completely inappropriate level of agitation. I would watch myself flip on people and not be able to stop it. I'm like, 'Why am I acting like this?' You can look perfectly fine and function well, depending on the time of day. In the morning, I'm super sharp, but then I can't have real in-depth conversations after 9:00. When you get really, really tired you might get overly emotional or agitated more quickly. 

I feel that I am better, but I don't know if this is as good as it gets.

Fran, 56 (Englewood, New Jersey)

Day 372 of COVID-induced symptoms

Fran

I started getting symptoms on March 20 and was hospitalized for pneumonia for two weeks. In June, I was showering, and after shampooing, clumps of hair started coming out. I started screaming in such a way that my husband had to come in and ask if something was wrong. I told him that I was losing my hair. I did not understand why. It was not just a little bit of hair: a major part of my hair started to come off. It was not like something that comes out of a brush. I was in shock. 

The second time I showered, more clumps came out, and I was screaming further, and I remember sitting on the floor in the bathroom, the water was coming down on me, and I saw all my hair in my hands, and I just couldn't believe it. Every time I got out of the shower, more clumps kept falling out of my hair. I thought I was going bald.

Everybody has one feature that they love. For me, it was my hair. I used to get complimented on how thick my hair was, and I did a lot of hairstyles every time we went out, but I can’t do anything with it now. If it were somebody else's head, I probably have lost three to four heads of hair or a full head of hair. It took about two months for it to stop. The only thing I can do every day is wear my hair in a ponytail because it's just strands of hair coming down, and the baldness shows. The only way for me to feel good about going out is by pulling my hair back. 

This was early June, and nobody knew about this side effect of COVID at that time. A hair specialist in Manhattan looked at my scalp and told me it was COVID-related because of the shock to the body.

Hair is a major part of a woman's femininity. I lost that due to COVID. I do see stubbles coming back a little bit, but it's going to probably take me a good two years for my hair to fully grow back. It's better than losing a life. When there's life, there's hope, and I'm glad to be alive.

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