“I was a very healthy 46-year-old man. I don’t smoke. I don’t drink. I’m not overweight. I eat healthily. Suddenly, I couldn’t walk one mile without gasping for breath. I was on an inhaler. I had a high resting heart rate, numbness in my feet, pains in my chest and abdomen. I could only eat oatmeal, or toast or I’d get massive acid reflux.”

FALL RIVER, MA: On March 3rd my three-year-old son came home from school complaining of back pain. It was an unusually specific complaint from him as he normally just says he doesn’t feel well. An hour after coming home, he began vomiting. Every five minutes, he would vomit again. We called the doctor who said if he doesn’t stop in an hour, take him to the emergency room. 

On March 3rd my three-year-old son came home from school complaining of back pain… An hour after coming home, he began vomiting. Every five minutes, he would vomit again.

When we went to the hospital, his temperature was extremely low, 96.2 ℉. They put warming blankets on him and tried to give him anti-nausea medication. His eyes kept rolling into the back of his head and he was still vomiting every 5 to 10 minutes. Once they started putting fluids and medication in him, he started to perk up for half an hour. He started joking and laughing, charming the nurses as he does to everyone he meets. Then, he started crying and rolling in the bed in discomfort. 

They performed blood tests for poisoning, sepsis, flu, and a host of other things. The nurses had a grave look on their faces. He slowly improved enough to rest. He tested negative for the flu. In fact, everything looked fine except his immune response was higher than normal. There were no tests for SARS-COV2 back then. No one knew the term COVID-19. The news had stories about a Coronavirus, but never once did anyone mention it at the ER until I asked if they would test for it.

There were no tests for SARS-COV2 back then. No one knew the term COVID-19. 

“Vomiting is not a symptom,” the doctor said, “Neither is a low temp.” But, the nurses kept frowning at my son’s condition and told us in hushed tones, “He’s going to have a rough time for three weeks. There’s a really bad bug going around. It knocked my husband down for 14 days and he’s still not right. Don’t panic if he’s not better in a week, even two.” They released him with no diagnosis and told us to follow up with his pediatrician.

His pediatric nurse said, “Watch his breathing. Keep a very close eye on that. It’s not going to clear in a week, maybe not even two. This is a really bad flu, but most kids seem to do fine after about three weeks.” I’d never heard of such a thing. I asked again and again if it was the Coronavirus. Over the next few weeks of doctor visits and panicked phone calls to the nurse, I pressed the issue. “Can we get him tested for Coronavirus?” I pleaded.

Over the next few weeks of doctor visits and panicked phone calls to the nurse, I pressed the issue. “Can we get him tested for Coronavirus?” I pleaded. 

“He doesn’t have any of the symptoms,” they told me. Turns out he had the exact symptoms that show up in rare cases of COVID-19 in children, but no one knew that at the time.

he had the exact symptoms that show up in rare cases of COVID-19 in children, but no one knew that at the time.

It took three weeks but he was much better by March 11th. Then, my wife got extremely sick on March 5th. My mother came to help out. She got sick the next week. I got mildly sick on the 7th. We all felt better a few days later.

After I came home from work on March 13th, I started to feel extremely nauseated and almost fainted. For the next few hours, I struggled to breathe. And I mean really struggled. It felt like the air was going in and out but not doing anything like I was drowning on land. Every part of my body was on fire. My heart was pounding. I couldn’t speak. I couldn't open my eyes without the room spinning. I managed to send a few texts to my mother and sister-in-law to be prepared to get a call to come help as I was about to be very sick. We got my doctor on the phone after an hour. By then I could talk and seemed to be getting a little better. I was told it was an anxiety attack. I've had anxiety attacks before. They go away in a half an hour. They don’t cause you to have trouble breathing for days or make it feel like there’s fiberglass in your lungs. They don’t cause burning in the limbs or severe joint pains. I was too tired to argue just glad the worst was over.

It felt like the air was going in and out but not doing anything like I was drowning on land. Every part of my body was on fire. 

The next attack happened a few days later and was longer and worse. “Allergies,” they said that time. I asked if I could get tested for the virus just in case. “You don’t have a fever and your breathing improves between attacks. It’s not COVID-19,” they replied. 

I was told it was an anxiety attack. I've had anxiety attacks before. They go away in a half an hour. They don’t cause you to have trouble breathing for days or make it feel like there’s fiberglass in your lungs. They don’t cause burning in the limbs or severe joint pains. I was too tired to argue just glad the worst was over.

I’ve never had allergies in my life. I strongly doubted that I magically developed them in early March with no real allergens in the air. It did feel like what other people said about allergies. If you’ve ever had a cold where you can't clear your lungs, and after a few days it’s so miserable you just are praying to cough something up, that’s what it feels like every day at its best. Except it never clears. It never gets better. In the worst moments, you have to concentrate on each breath to keep conscious.

In the worst moments, you have to concentrate on each breath to keep conscious.

During every bad attack, I had to make a decision: Go to the hospital, leave my family terrified, maybe be put on a ventilator, or hold out until it either subsided or got too difficult to breathe on my own. I chose to stay at home.

I finally convinced someone to get me tested. It was over three weeks after my first symptoms. Of course, it came back negative. So, I joined a few support groups and their stories were all the same. The folks who couldn’t shake it in two weeks got worse and had this pattern of relapse, then recovery, then maybe one good day giving you hope, then another relapse and start over. I read others with the exact same story over and over. Almost all had tested positive except those like me who got tested late.

I joined a few support groups and their stories were all the same. The folks who couldn’t shake it in two weeks got worse and had this pattern of relapse, then recovery, then maybe one good day giving you hope, then another relapse and start over. 

By early May (two months in), my wife convinced me to go to the hospital while I was having an attack. “Maybe they'll find something while it's going on,” she said. We called 911 on May 6th. After eight hours in the ER and countless tests, the doctor agreed it wasn’t allergies or panic attacks and recommended I see a cardiologist. Everything checked out: X-ray, blood work, heart monitor. Everything was normal except the breathing and elevated heart rate — 120 bpm laying down for two hours straight.

Everything was normal except the breathing and elevated heart rate — 120 bpm laying down for two hours straight.

Still, no one was aware that COVID-19 could cause these long term issues except the people who were experiencing it. The medical community as a whole still hadn’t realized COVID-19 can affect every system in the body. The support groups I was in started doing their own studies on symptoms, frequency, and severity of the disease. They found that there was a definite long term condition happening to some people. They started calling us “long haulers”.

The support groups I was in started doing their own studies on symptoms, frequency, and severity of the disease. They found that there was a definite long term condition happening to some people. They started calling us “long haulers”.

I was a very healthy 46-year-old man. I don’t smoke. I don’t drink. I’m not overweight. I eat healthily. Suddenly, I couldn’t walk one mile without gasping for breath. I was on an inhaler. I had a high resting heart rate, numbness in my feet, pains in my chest and abdomen. I could only eat oatmeal, or toast or I’d get massive acid reflux. I went back to my doctor with all this and said, “This isn’t allergies. This isn’t anxiety. It’s not a heart condition. What is it?”

I was a very healthy 46-year-old man. I don’t smoke. I don’t drink. I’m not overweight. I eat healthily. Suddenly, I couldn’t walk one mile without gasping for breath. I was on an inhaler. I had a high resting heart rate, numbness in my feet, pains in my chest and abdomen. I could only eat oatmeal, or toast or I’d get massive acid reflux.

I finally got a luke-warm diagnosis of “post-viral syndrome”. I said, “It started in March. All the symptoms were there except fever. It was COVID-19.” 

Even then they said, “It could technically be caused by any virus.” It was frustrating. I realize that in the medical profession, it’s a process of elimination. But, I know my body. I knew the symptoms matched the reality of what was happening to others with COVID. I also knew there was nothing they could do anyway. The antibody tests weren’t available for mild cases. There was no medication or treatment available for long term symptoms. All I could do was see the cardiologist rule out heart disease, and if my heart was fine, they’d send me to some other specialist until someone found something.

they’d send me to some other specialist until someone found something.

By the end of June, the cardiologist had found nothing. June through September I had a lot of improvements. The attacks stopped. I just had a dry cough occasionally and some shortness of breath. The attacks came back again in September. The attacks were less frequent, not as severe and recovery from them has been quicker.

It’s December now — about nine months later. I try to focus on my family and enjoy the good days. The bad days I tolerate, but I’m not the same person I was before March 3rd when my son got sick. I have never been scared of anything in my life. I’ve always been the one who’s calm in the face of danger. Now, I’m terrified. 

Those initial attacks were the most frightening thing I have ever experienced. I haven’t even processed them yet. There were nights I stayed awake because I was sure if I slept I’d stop breathing. There was a solid four days where every breath I took I had to consciously force my body to take. It’s like swimming out too far on a lake and wondering if you’ll run out of the energy to keep swimming before you reach the shore. I’m scared my family won’t have me around to help, or worse that I’ll get so bad they’ll have to take care of me full time. I’ll never be the same mentally even if I do completely heal physically.

It’s like swimming out too far on a lake and wondering if you’ll run out of the energy to keep swimming before you reach the shore.

Thankfully, I can still work. I don’t have the crippling fatigue most long haulers have. I’m thankful my family, especially my young son, recovered quickly. I’m thankful my symptoms are ‘mild’, but they are still scary. I still get occasional attacks of difficulty breathing. I have a dry cough almost constantly. My feet go numb. I get dizzy and nauseated easily. I’m still not right. 

I see people on Facebook say it’s just a bad flu, or that the new vaccines pose a greater risk than COVID-19 does. I would never wish this upon anyone but sometimes I wonder if they’d be as cavalier about it if they’d been through what I have.

I want people to understand that the death toll is just half of the tragedy of COVID-19. There are people out there, many more than they would guess, that have had their health severely and possibly permanently altered by this virus. Sure some folks walk away with nothing more than a head cold, but before this is over almost everyone will know someone who dies or ends up like me due to COVID-19 if we don’t work together to slow the spread until a real solution is available for everyone.

I want people to understand that the death toll is just half of the tragedy of COVID-19. There are people out there, many more than they would guess, that have had their health severely and possibly permanently altered by this virus. 

The short version of the message: You don’t want this. You don’t want your mother, your spouse, your child, anyone you know to get infected. Don’t take the risk.

Be smart. Be safe.

Chris

March 13, 2021 Update: I am a 47 year old Digital medical Database Analyst from Massachusetts. On March 3rd, 2020 my son went to the ER with a mystery illness that lasted for 4 weeks. March 5th my wife became extremely sick. I first felt sick on March 7th. I got better for a few days then crashed on March 13th. My son and wife slowly recovered over the next 4 weeks. I did not. My illness lasted months. I thought I'd gotten better by August but in September it came back.

I'm what's known as a Long Hauler. Someone who survived COVID only to go on to have symptoms for months after the initial infection. The infectious disease specialist I am seeing says we 'long haulers are suffering from a very common post viral experience that has been ignored and overlooked until now. The two biggest things I learned from him are that the process of getting better will take years (I may relapse several more times), and that if I feel like no one is listening or believes me to take comfort that no one was listening to HIM about the effects of post viral syndrome and he is a Doctor. Now with the sheer numbers of long haulers recovering from COVID, the medical community is forced to acknowledge, research and treat it as a real disease.

I have been fortunate. I am almost 100% back to pre-COVID normal. I work from home so I missed very little work during even the worst of my illness, and it seems I have been spared any long term damage. I've learned to never take good health for granted. It can be taken away in an instant and completely at random. I've learned that a virus can alter how the entire body functions, sometimes in bizarre ways. Little things l never knew could be taken away like yawning or feeling my muscles relax when I lay down have finally come back after being gone for almost a year. I can't even talk about the experience with most folks unless they've been through it. I have yet to face the mental and emotional trauma. I can't face that until I know my family are relatively safe.

My wife and I are now fully vaccinated. Our son is healthy and the people around him are also close to being fully vaccinated. We are looking forward to a summer where we can do all the things we missed out on last year, especially gathering with family. This is the most hopefully I have been since before COVID entered my household last March. As horrible as our experience was, we know we were spared the worst and with time things will hopefully return to some form of normalcy.