“I am going to ask if you want to go, but I know you’ll just say no.”
I have this conversation often, but two recent times stand out: One was when a family member was getting an honorary doctoral degree from a local university, and another one was an award event where I was being honored.
Heartbroken, I did not attend either event because if any pandemic protections existed, they are weak at best. It doesn’t help someone like me, a person with a sensitive immune system, if people are only masked as they walk through a door and then proceed to take off the mask to eat, drink, and be merry.
To add to all of this is Long COVID, or its more technical name, a post-acute sequela of SARS CoV-2, the virus that causes COVID-19. But what does that mean? It means that some people who have gotten COVID are experiencing long-term symptoms — including fatigue, breathing difficulties, muscle and chest pain, brain fog headaches, and a fast heart rate — anywhere from weeks to months after they’ve initially recovered.
While we are still learning how long is Long COVID, a recent report by the U.S. Government Accountability Office found that it has “potentially affected up to 23 million Americans, pushing an estimated 1 million people out of work.”
No one is asking for lockdowns or shutdowns. Since COVID is airborne and multiple infections may add to greater longterm health risks, simple mitigations like indoor masking, air purification, frequent hand washing, vaccinations, and boosters make a big difference. If all of these had been in place I could have seen my dad get his doctorate and collect my award.
I wanted to turn this month’s column over to people who are dealing with Long COVID as a way to inspire others to do the best for each other.
The following interviews have been condensed for space and clarity.
Rich is a Pittsburgh native from the North Side who currently lives in Beaufort, S.C. where he is a park ranger.
When did you first become aware of COVID?
I first became aware of COVID in March 2020, when everything started to shut down and it really started to affect aspects of everyday life. Like many others, I thought, and hoped, that a two-week lockdown would curb the spread of the virus.
What protections did you follow before getting COVID?
When we first traveled to South Carolina in mid-March to look at apartments, we masked, wore gloves, used an obscene amount of hand sanitizer, and practiced social distancing. This has been kept up since then, although we gradually dropped the gloves. When vaccines and boosters were offered to the public, we didn’t hesitate to sign up.
When we eventually started eating at restaurants again, we only did so on outside patios. I work a public-facing job, but we still take all necessary precautions with mask-wearing and social distancing.
Are you aware of how you got COVID?
I tested positive for COVID on May 16, 2022, just a week after I attended my college graduation ceremony in West Virginia. Although I wore a mask to the event, it’s the largest gathering of people I’d been around since early 2020. To my knowledge, it’s the only time I’ve had it.
When did you become aware you had Long COVID?
Just a few weeks after I recovered, I visited the ER, as my doctor suggested I get checked out as soon as possible. I reported having continued shortness of breath, severe heart palpitations, and overall exhaustion. After several rounds of blood work, the doctor told me they’ve been seeing these symptoms in post-COVID patients, and reported that they’re indicative of Long COVID.
How have you dealt with these issues?
I just finished wearing a heart monitor for a week, and am scheduled to have an echocardiogram, in an attempt to figure out if there’s any permanent damage to my heart. Unfortunately, it’s something the doctors have had difficulty figuring out.
My symptoms have changed slightly since June, as I’m slowly gaining energy as time goes on. The shortness of breath comes and goes, while the palpitations are about as common as they were shortly after I recovered. I, at least, find some consolation in news a good friend shared with me — his palpitations dissipated two years after he initially contracted COVID in 2020.
What’s the message you would like to tell people about COVID?
A lot of folks don’t factor in, it is not just a 10-day quarantine. For a lot of cases, you’ll be living with this for months, maybe years afterward. And it sucks. I don't have nearly the same energy as I had before May 2022.
My dad died in June 2019, just eight months before the start of the pandemic. I often think about how he’d feel about this situation if he were alive today. Although I really miss him, I’m also thankful he doesn’t have to see how the state of things has deteriorated since his passing.
Meg is a freelance writer and editor who lives in Pittsburgh with her husband and four children.
When did you first learn about COVID?
I remember my then-8-year-old son was worried about it, and kept telling me about this virus in China. I told him he was being silly. Then all of a sudden, it was here. I remember being in the 7-11 on 65 in Emsworth and thinking “Can I touch anything?” The next day, the lockdown began.
How did you deal with the initial lockdown?
Honestly for us, with two full-time jobs, four kids, some with disabilities, it was pure hell. There were not many of those sweet “hunkered down at home” moments I saw others post about. My kids really had a tough time, and I lost my temper way too much, and I was very thankful when the weather broke and we could go hiking. We spent a lot of time lost in the woods, and it was our saving grace.
When did you have COVID?
We got it in November 2020. I got it from someone caring for our children because, at that point, we did need and feel okay about outside help. They were being careful, and I don’t fault them at all. These things happen.
What was your experience with COVID?
I cannot even describe how sick I felt. I haven’t been that sick for that many days, ever. My fever was 104-105 for, like, a week. I was delirious. I don’t really remember most of it.
We all had it, all six of us, but I was by far the sickest. I went to the ER once for fluids and was sent home. Then everyone around me started to get better, and I wasn’t. In December, we went to the Carnegie Science Center. I figured we had a period of immunity, why not go do something? And I couldn’t make it up those spiral ramps. We got to the body floor, and I put my hands on that heart rate sensor, and my heart rate was erratic and wild.
I went to my PCP, and they sent me straight to the ER. I spent a week in AGH with three blood clots, as well as issues with anemia, which I have never had an issue with, but they have seen tied to some COVID issues. I spent the next several months on anticoagulants with regular scans, and continue to have anemia issues that need regular iron infusions.
Have you continued to feel any health issues as a result of having COVID?
The ongoing anemia and brain fog are the main ones. I know that there are many reasons women my age become anemic. I’ve had gastric bypass, which can cause anemia, and have a uterus, which is another source of anemia (menstruating). However, despite all that, I’ve never had issues before and have had repeated blood work for years.
It was very, very sudden with the onset of COVID. My hemoglobin was 4.2 when I showed up at the ER. That is critically low. I was at risk of cardiac arrest. The brain fog has been the worst part for me, though, as a journalist. I feel like I am off my game, confused at times, forget things. More so than “mom brain.” It’s hard to describe.
It’s worst in the evenings, and I’ve seen it described in some Long COVID groups as feeling similar to the sundowning elderly dementia patients experience late in the day. It’s like my brain is just done for the day. I also apparently have a broken sense of smell. Some days, it’s fine; some days, I can miss a stinky pile of dog poop right next to me, or something that should smell good smells like rotting meat or wet cigarettes.
What, if any, protections do you use now?
My whole family is vaccinated. My husband and I are boosted, and my kids are getting a booster before school this fall. I wanted to see if an Omicron-specific booster for kids would come out. My youngest is 4, and is getting her shots now.
I watched the first shots go into arms in NYC from my hospital bed in December 2020 and cried with relief and anger — relief that it was here, anger that it came too late for me. I was one of the first group to get my shot due to being high risk. I am so sad that so many have been tricked and duped by internet rumors into thinking the vaccine is harmful.
I am skeptical about everything, actually read the pamphlets when my kids get a vaccine, and yet I trust my doctor and I trust the science. We mask when required or when a friend asks us to, when we aren’t feeling well until we can test, etc. We will see what fall and winter bring as far as if we go back to universally masking. I have to admit since I’ve been sick, the masks give me a vertigo-type feeling after a few hours.
What are your thoughts on how local and national government and public health policy have handled COVID mitigation and surges, as well as Long COVID?
It’s all been terrible, all administrations, from Trump to Biden. Trump downplaying it was bad, Biden touting that he can “still work” while he has it sends the message that it’s no big deal. It’s all bad. I don’t know much about what they’ve done for Long COVID.
What are your thoughts as we are able to enter a new school year?
I am not anxious about my kids being back in school. Kids need to be educated and be social. We should have prioritized schools over bars and restaurants all along. My kids are vaccinated and I’ve done all I can do. Thankfully, the threat for them from COVID is low, and we will do our best to test and isolate when ill. COVID is here to stay; we can’t keep them home forever.
Please share any additional thoughts or add anything I may have missed.
I just really hope that society can quit playing Long COVID off like it’s not a big deal — or just because you had COVID and were fine, please don’t discount my experience. I know people that have had cancer that were fine and people that have died from cancer. No one downplays cancer. Why do we gaslight those with Long COVID?
Long COVID resources
ACL Administration for Community Living
Department of Health and Human Services