5 Women Share Their Stories About Being A COVID-19 ‘Long-Hauler’

It has been a year since the deadly coronavirus arrived in the U.S. In that time, over 400,000 people have succumbed to the virus, a catastrophic drumbeat of lives cut short. Many others have fallen sick and gotten better.

And then there’s another group of people, those who had COVID-19 but then never fully recovered. Months later, they’re still suffering from a plethora of seemingly unrelated symptoms, ranging from respiratory problems to joint pain to chronic fatigue. Their lives did not go back to normal after COVID-19 and they’re not sure if they ever will.

Much is still unknown about “COVID long-haulers,” as these patients are called, and we can only guess just how many people are impacted. Scientists are currently studying the long-term health consequences of COVID-19, and health centers catering to patients with lingering symptoms are cropping up all over the country. In the meantime, for those suffering, it can be a lonely and difficult ride with no sense of when their symptoms might stop.

Online, Facebook groups dedicated to COVID long-haulers are filled with frustrated people — most often women — detailing the many ways their lives have been upended by the virus. While research is scant, some studies suggest that women are more likely to experience long-term effects of COVID-19 than men. In lengthy posts, these women tell of indifferent medical providers. Inexplicable hair loss. Of bodies that no longer do what they once did. Of disbelieving friends and family. And the ubiquitous fear of getting COVID-19 again.

HuffPost asked a handful of women with long-term COVID-19 symptoms to share their stories. They have been edited for clarity and length.

The Unicorn In The Group

Kaaren Duren, 51, store employee, Fargo, North Dakota

Last March, I was working an office job, plus I had two part-time jobs, one of which was at a big-box store. They provided us with masks, but we weren’t required to wear them. Not everyone did, and I did not. So — my bad. I should have. I was unloading carts, and I’m pretty sure that’s where I was first exposed. I was one of the first hundred cases in North Dakota.

I developed a sore throat and a little bit of a cough on a Monday. I thought I was having a reaction to the tuberculocidal spray we were using to sanitize my office because I’m sensitive to smells. On Thursday, I lost my sense of taste and smell. At that time, I didn’t know that was a symptom. That Friday night was the first time I spiked a fever. I did an e-visit with a local provider and they had me come in that Saturday morning. By Sunday night, I had my results. That first week when I didn’t know I had it, I felt like crap. The second week, I just basically went from bed to couch. I had no appetite. I only ate when my stomach growled. I was sore everywhere. For two days, my eyeballs hurt so bad I couldn’t read a book, I could barely focus on the television. That overlapped with a different symptom, and then another symptom would overlap with that symptom, and so on. My cough didn’t start until that second week. But I never had a breathing problem and I wasn’t hospitalized, so I felt fortunate.

But that was eight months ago. I’m still dealing with lingering effects. I have extreme fatigue. I can’t exert myself at all. I get tired even going up and down the stairs of my apartment building. It just wipes me out. I have nerve pain, joint pain. My knees are really bad. At night, all of a sudden, my entire body will feel like my skin is on fire. It’s not a hot flash because I was done with those by the time this stuff started.

A typical weekday for me means putting in a full day of work. I have one part-time job now aside from my full-time job. It’s not really an option to slow down. I usually do OK during the day, but by evening I’m shot. I don’t do much but the necessary maintenance things at home, and there are many evenings in a row where I’ll just sit and watch TV because I don’t have the energy to do much else. I still work at a part-time job one night a week, and it drains me, but I keep doing it — once you tend bar, you get used to the extra cash — it buys a lot of gas and groceries.

For a long time, I was the unicorn. I was the only one in my close friend group that had it up until September. Not all of my friends took my lingering side effects seriously. They attributed it to menopause or the fact that I am over 50. But on a personal level, I don’t feel that I would be where I am now if I hadn’t had COVID. My body is just different. I’ve explained some of the changes in my body by saying I’ve changed from a pear to an apple. I used to carry all my weight in my hips and behind, and now it’s shifted to my middle, and I’ve gained almost 15 pounds I just can’t shake.

I’m not as resilient as I used to be. I used to be able to go and keep busy all day and night, and it’s just not possible for me now. My left knee is especially bad. That started with odd tingling sensations and not being able to put any weight on my knees at all. My right knee has mostly recovered, but I still can’t really kneel on the floor or get up and down with ease. It’s painful. My eyesight has been affected as well. My eyes tire easily, and I’m fairly certain I’ll need a stronger prescription after I see the optometrist.

As far as the mental repercussions, there’s the brain fog and the aphasia that are no fun to deal with. It’s frustrating to “lose my words,” and I think it’s kept me from having some conversations. I used to love to get together and visit with friends, and now I’d just as soon not have long conversations. They’re taxing. The complete loss of libido has been an odd thing to adjust to, but now is not a good time to be in close proximity to other people anyway, so maybe that part is just self-preservation?

The hardest thing for me by far has been not having the energy to do anything on the weekends — even travel to see my granddaughter. If I do get there to see her, I’m limited in the physical things I can do. Even getting down on the floor to play is difficult and can get painful. It makes me sad.

As for not being believed by others: I know my own body and I know my own truth, and it’s not that important to me to change others’ opinions (at least not on this particular subject!). It’s been suggested that I have my thyroid checked out and I have, but there’s nothing wrong there, so I’m fully attributing my lingering symptoms to COVID. Nothing else makes sense.

It’s been frustrating to interact with people who don’t believe in COVID. I come from a very small town in central North Dakota, and there’s a lot of ignorance there. I don’t suffer fools lightly. I tend to throw it back at them, and say you know what, I had it. Still, small towns in the Midwest — especially my hometown — might have some ignorant people, but they have some of the best and most supportive people, too. Within days of my diagnosis, my friends and family back home had deposited almost $2,000 in my personal checking account, completely unbidden. I was overwhelmed by the support and heartened by their generosity. That money really helped me get through the months of no work and were a welcome and needed supplement to my unemployment benefits.

The Exhaustion Is The Most Frustrating Part

Roshni Ghosh, 37, patent attorney, New York

A neighbor in our apartment building went to the synagogue in Westchester where there was an early COVID-19 outbreak, back in April 2020. At that time, nobody really knew what COVID was. The tenant ended up infecting our doorman and super, and somehow we got it, probably after using the shared laundry room.

My symptoms started with a headache. I remember I was in a meeting at home and I kept on taking Advil, probably six or eight and it wasn’t taking care of it but I just plowed through. For background, I’m a patent attorney and I work in the field of biotechnology. I have a Ph.D. in biology. The next day I woke up with a fever. So did my husband. I was running around 101 and he was about the same. We also lost the sense of taste and smell. That’s when we suspected we contracted COVID but since our oxygen levels did not dip below 95, we couldn’t get tested to confirm. A few nights later, I had a really scary experience. It almost felt like somebody tied both my hands and legs and I was drowning.

After that, I was seriously sick and weak. I could barely sit for 15 minutes at a time. The only thing that I could taste or smell was my homemade chicken soup with pepper and ginger and turmeric, which is an Indian home remedy. Turmeric, ginger, and pepper have anti-inflammatory properties.

The fever was gone in two weeks, but I was still tired. And I’m still tired now. Like, I can’t pick up heavy stuff. And by heavy, I mean a laundry hamper. Last May, I went back to my doctor to get a blood test done. It turned out that all my vitamin and mineral levels are low. And on top of that, I became anemic, I wasn’t before. These days, I still have tachycardia, a racing heart. Sometimes, I’ll wake up in the morning and my heartbeat would be 140. My resting heart beat used to be around 65. Now that has gone up to the 80s.

Before COVID, I used to have way more energy. When I was completing my Ph.D., in my last semester, I was taking five courses on different aspects of intellectual property law. I was doing two internships. I was writing my thesis and I was conducting experiments in the lab. I had all of this going. Just a few months before COVID-19, I was managing full-time work, I was writing a blog, I was publishing stories in Bengali, I was giving time to two voluntary nonprofit organizations, and now I can just barely do my work.

I stopped writing. I haven’t gone back to photography, which was something I loved to do. Before COVID, I generally never needed more than four or five hours of sleep. At the peak of COVID, I was sleeping 12, 14 hours a day. Now, I sleep seven or eight hours. The exhaustion is the most frustrating part of the COVID, I would say. If I take a short walk, I feel totally wiped. I switched jobs to one that was less demanding. Mentally, I need more time to process things now and my memory got affected as well.

People don’t really understand when I explain that I am still sick. When I first told my friends and family that I had COVID-19, they said, you are young, you are healthy, you will be fine.

Even when I went to my primary care doctor in May, after I had COVID-19, he didn’t really take me seriously. I kept telling him I was still sick and so tired. Only when he got the blood test reports back did he start taking me seriously because he saw that what I was saying was corroborated in the blood reports.

And now I guess he’s getting multiple patients with similar symptoms, so he’s much more receptive. He sent both my husband and me to a cardiologist and a pulmonologist. Both the cardiologist and the pulmonologist told us that they are now seeing multiple patients with similar post-COVID symptoms. However, they don’t really know what’s causing it. Both suggested to get plenty of rest and slowly build my strength back up. So far, there is no medicine to cure these symptoms, since the doctors are not entirely sure what’s causing this.

I think it’s slowly penetrating in people that the effects of COVID-19 are more serious than we were giving them credit for. People were focusing only on mortality but I think it’s clear that morbidity is pretty important as well.

When I talk to people who scoff at COVID-19 or its lingering effects, I try to ignore them. It affects my mental health otherwise. Finding the Facebook group Survivor Corps was a really good resource because that’s where I got validation. If you don’t have medical training or at least a good understanding of biology, I would ask you to use it with a grain of salt since people’s experience and symptoms vary greatly. But it was where I finally realized I wasn’t going crazy and it wasn’t all in my mind because so many other people were experiencing the same symptoms.

I Feel Like One Of My Patients

Justine Heninger, 29, Austin, Texas

I work in an ICU as a nurse. Early in the pandemic, we were COVID testing every single person who came in the door. But during the summer, testing supplies were running low and we began only testing people if they met certain criteria. In June, I had a patient who wasn’t tested. I cared for him for two nights. A few days later, I started feeling sick. It almost felt like a piece of glass was stuck under my clavicle. I was sweaty and fatigued. That night, I slept away from my husband because I had never felt like that before. He came down with COVID three days after me.

I was out of work for 20 days due to my sickness. I was hot. I was short of breath. I was super fatigued. I was just so exhausted. But since then, I’ve had so many more symptoms. I’ve had persistent tachycardia and heart palpitations. It’s like my heart is beating out of my chest. I get really short of breath. It feels like someone put a corset on my upper chest and just tightened it as hard as they could. I have persistent headaches. I have earaches and ear pressure. I have tooth pain. Things that used to smell good to me, like sautéed onions, now smell foul. I can’t cook them at my house, they smell awful. I get burning headaches — they’re not like any headaches I’ve ever felt. It literally feels like my brain is on fire. My lungs burn at times. I have nausea, vomiting, stomach cramping. I can’t sleep.

Before getting COVID, I was an active person. I would work 12-hour shifts on my feet, spend my days off outside at the lake, walking for hours in my neighborhood, paddle boarding, swimming, cooking, running with my dogs, dancing to music, you name it. Now I spend 75% of my days lying down in bed or on the couch because my body can’t handle being upright.

I struggle with basic things like eating, sleeping, standing, walking up stairs. My body feels like it weighs 1,000 pounds sometimes and moving takes mental preparation and determination. Something simple like taking a quick shower will often require me to lie down for an hour afterwards because my body is in burning pain and completely drained. Having constant chest pain and feeling my heart beating out of my chest is my new normal. My body doesn’t tolerate food the same now so I’ve had to adopt an autoimmune, low-histamine diet which is very limiting and requires a lot of preparation.

I’ve also had to start taking supplements and medications to control my immune response and pain, so many that I even had to buy an extra-large pill box. Like, what the heck? I’m only 29. It’s also important to mention that the mental struggle that comes with losing quality of life, on top of not feeling well, strained relationships and the stress of missing work, has been incredibly difficult.

I was just on a call with my doctor and I ended up crying because I felt so frustrated and so discouraged and so alone. I feel like nobody knows what to do; they just tell me to go see somebody else. At this point it feels like the only people who realize how bad it is are the other people who are going through it. By going online, I was able to validate that it’s not in my head and that I should not be feeling like this. It isn’t normal. It feels like if I don’t treat it now, I’m going to feel like this the rest of my life.

Getting COVID has uprooted my entire life. I was out of work for three weeks in June, went back for six months with persistent symptoms, then got hit by another flare-up and have been out since November again. Taking care of my body has become a full-time job. Relationship-wise, it’s been hard. I have guilt around being a good partner. I can’t take our dogs on walks or cook dinner like I used to. I try to contribute, but I am so tired. Cooking is something I love doing for my husband and now I can’t. It was recently our one-year wedding anniversary and I was like, sorry, I can’t do anything and I can’t eat anything and I can’t have a glass of that nice bourbon you bought us.

This whole experience has made me think, gosh, this is what my patients feel like. If nothing else, at least I understand that. I have gotten to the point in my recovery where specialists have acknowledged that even if they can’t offer a way to treat me, they can offer me validity that my symptoms are real and I’m not the only person experiencing this.

I’m not sure that people understand the extent to which this is impacting the lives of long-haulers. I have avoided telling many people about my situation because without concrete testing, diagnosis or treatment it’s difficult to explain what’s happening to me. I am young and appear healthy, so when I have shared what’s happening to me, it’s never been the reaction that I hoped for and that has left me feeling very isolated, unheard, and angry at times.

I feel like I’ve lost everything. I love my job, honestly, but it makes me question just how much we’re valued as nurses. I feel pressured to go back to work, even though I am still so sick. I give it my all, all the time, and then to be met with such a lack of support is discouraging. I’ve lost a little bit of faith in people, being so resistant to looking out for their neighbors and wearing a mask and those kinds of things but honestly, even the people who are the most resistant, I wouldn’t wish this on them because this is awful.

I’m A Shell Of A Person

Rachel Milstead, 46, Crofton, Maryland

On May 19, I started having what I thought were allergy symptoms. I had a headache and I felt really tired. I came home from the grocery store and I asked my teenage son to come out to the car to get the groceries. All of a sudden, I couldn’t get out of the car. My head was spinning and I felt like I was going to throw up. I went to the ER, but I tested negative so they sent me home, even though I had a fever of 102 and felt like there was an elephant sitting on my chest. Two days later, I went again to the ER. That time, I tested positive for COVID-19 and also had double pneumonia.

Things got a little blurry after that. I remember crying in the hospital while a doctor explained that I was going to receive convalescent plasma. It was my son’s 16th birthday and he was home alone while I was signing papers for experimental treatment.

I’m a single mom. When I came out of the hospital, my son had to nurse me and take care of me. He literally has learned to cook. I didn’t have the energy to do anything. It was a real shift: He’s an athlete and usually I was the mom running around, taking him to practices. Now, he’s chasing me around telling me, Mom, you need to put your oxygen on, or you need to go back to bed. We had to learn to be that mother-and-son unit again.

I am a shell of the person that I was. I feel like I’ve gone from the age of 46 to 86 in a month. I don’t move like I used to move, I don’t think like I used to. It takes my brain longer. Some days at work, I’m able to joke about it, and other days I just apologize to my co-workers.

Anything that I do, I have to consciously think, is that worth using any of my energy for? I have to decide, am I gonna do two loads of laundry today or am I going to go to the grocery store? Because I physically can’t do both. It’s frustrating because before the coronavirus, I’m doing four loads of laundry, going to the grocery store, coming home and cleaning, and then going out and doing something else. And now if I do two loads of laundry, then I’m done for the day.

I’ve had some friends who are still like, oh, when you get better, we’ll go for a walk. And I’m like, it’s been six months! I don’t know if I’ll get better. I’m not saying that to be negative or doubtful, but it’s at this point, it’s kind of a reality.

I do get a little angry. Why am I the one that got sick and why are these other people who are not listening to anything, why did they not?

God Spared My Life For A Reason

Marjorie Roberts, 60, life coach, Atlanta, Georgia

I was managing a gift shop in a hospital when I got sick. March 26, 2020, was the first day that my symptoms appeared. I was walking back from the mailbox in my complex and I kind of stumbled. If I wanted to walk to the left, my body would go to the right, and if I wanted to walk to the right, my body went to the left. I lost all balance.

By the time the sun went down that night, my life was forever changed. I started to have headaches, really bad diarrhea and extreme fatigue. I had this feeling of weirdness all over my body, like somebody was literally sucking the life out of me. My illness progressed quickly. A few days later, I went to the emergency room for help. I had a test done but it was so early in the pandemic, no one knew what they were doing. They only did one nostril and I got a false negative.

The next four months were a scary ride for me, I was sicker than I had ever been in my life. I had no control over anything. I was throwing up all the time and having diarrhea all the time. So many things were going on in my body simultaneously. The worst part was not being believed by my own doctor. When I told her about my symptoms, she told me that I didn’t have COVID-19 and that it was all in my mind. She broke my heart. It wasn’t until June when my new doctor did bloodwork and confirmed that I did have COVID-19. By that point, it had done so much damage to my body, it was just unbelievable.

It’s been almost a year since I got sick. I don’t have the energy or the stamina that I once had. I can’t do much outside. I suffer from what my husband and I call “COVID crashes,” where I lose all energy. Everything is different now. If I get a headache, it’s not a normal headache. The fatigue hits when it wants to hit. It’s so debilitating, some days all I can do is just lay around.

Mentally, I’m in a pretty good place because I knew to reach out for help. I found a really phenomenal therapist to work with. COVID-19 is very dark, it takes you to such a dark place. I lost some friends because I went public with my COVID-19 story. They were embarrassed and didn’t want me to talk about it. They treated me like I had the plague or I was dirty. But even on bad days, I knew that I had to find a way out of the depression. It was up to me to defend myself and find my way out.

These days, I really don’t plan things. I don’t know how I’m going to feel from day to day. But I set small goals for myself. Some days, I’m able to reach all those goals, and some days, I’ll fall short, but I’m still living, you know. God spared my life for a reason.