Writing about disability is a blessing and a curse. I manage to share my knowledge with others, and yet I am cursed with too much information on the subject. Often I find myself stuck in a strange environment, where I’m surprised at what people don’t know. Why should they know? I often wonder. They don’t live and breathe health information like I do.
This is certainly the case with the long Covid. I had it. I understand. I also know people who have not experienced it like me. It’s clear. What puzzles me is why it’s so hard to understand that long Covid can be crippling and their job right now is recovery. When they recover, they want to work.
Usually I talk to experts on health topics, often including people with lived experience. In this article, it’s all about lived experience. I hope you take away a more vivid picture of what it’s like to fight to recover and how much people want and need to work again. But also, I hope you understand why work will be different in 2023. This is not a prediction or a political statement. This is me telling you this is life after Long Covid for millions of people. Here is my story:
What is Long Covid?
First, there is my pharmacist’s point of view, which is best explained by telling you about my conversation with him a few weeks ago. He’s a nice guy who always has a smile and explains to me where my medicine is and how to use it. Last week while I was getting my flu shot we had a chat and I told him that because I had long term covid symptoms (Long Covid) my immune system wasn’t the best. I was worried that the flu shot would send me to bed for a few days. He assured me that I might feel a little sore, but don’t worry. And by the way, he asked, how long covid
For the uninitiated, like my pharmacist, here’s everything you want to know about the latest research on Long Covid, which remains a mystery in many respects. I googled this link in the parking lot and almost brought it to read to him. But he’s a busy guy and I didn’t want to be a jerk.
It wasn’t the first time I had to hold back. Last spring, when I reluctantly attended a family reunion and insisted on wearing a mask when no one else did, my mom asked me What’s wrong? I tried to explain to her but it was impossible to convince her of what she couldn’t see. I was sick. I was tired. And after months of working to get back to normal, I didn’t want to get caught again by a virulent new strain of Covid just before returning to work to embark on a colossal project. It was the first time I had been paid in months. She was furious. She asked me why I couldn’t think of my family first. How important it was for us to all be together. I didn’t understand ?
All I could think of was, couldn’t she understand? A lot of people don’t.
My parents enjoy family gatherings more than ever now that they are over 80 years old. But fully vaccinated, my mother insisted that hiding and missing events was ridiculous and selfish. What exactly do you have, anyway, she asked? What are the doctors saying? I explained that it wasn’t clear, but that I felt like crap. All I wanted to do was make sure I was healthy enough to work the following week. It seemed lost to her, but it’s a very real problem for people who have left the workforce and can’t come back because their bodies and minds are no longer able to function at the level they were used to. Or they can, but pushing each other means risking getting sick again. It’s a maddening cycle.
Why me? Why Long Covid?
The other way to see Long Covid is through the eyes of a patient like Eve Efron in Fairfax, Virginia. In February 2022, when the photo, above, was taken, she had been struggling with a long Covid for almost a year. She is pictured going through the pills and supplements she takes to help manage her symptoms.
I imagine I looked a lot like him in February, two months into my long Covid recovery – teary-eyed and overwhelmed – calling my father, a retired doctor, to check in. He was concerned about my state of mind and what I was doing to get healthy. I told him about the bone broth and supplements in my cupboard. I told him about the antidepressants and anti-inflammatories I was taking. Nothing seemed to work.
He was right to be worried. I was a big mess – angry, depressed, anxious and nervous, moving slowly but constantly to keep my leg and shoulder muscles from tensing up. I could have slept all day, but I walked a lot. My Fitbit said I walked about 5 miles a day. Sometimes 7 miles. I had a new puppy, Lucy, and house training required me to get up and go outside every three hours. Some days I was so tired that I’d nap with her in the hallway in my down jacket and snow pants, clutching her leash and the only glove I had left that hadn’t been chewed to shreds. It was my job, for weeks, months, in fact.
The irony is that all I wanted to do was sit at my desk and write. I wanted to be myself again. I had vivid dreams in which I wrote, edited, and spoke to clients. But when I woke up, my computer screen was dark and closed and even a little dusty. I had no memory of falling asleep most nights. I collapsed and woke up recounting my last thoughts looking at my phone. I had searched “how to beat brain fog” and ordered heated wraps for my legs and neck. The next day Amazon delivered a bulk shipment of heat strips – 100 of them – I cried. I thought the order said 10. I couldn’t afford 100.
So it’s long Covid. It is also depression, anxiety and frustration. All of them have physical manifestations, although they are emotions. Our bodies are inextricably linked. The body can collapse under the weight of heavy thoughts. I spent weeks begging my mind and body to get up and fight to recover.
Why don’t you work?
The struggle to recover from a case like mine or Efron’s was not for everyone who dropped out of the workforce. Maybe they decided to babysit their grandkids when daycare was closed and found they loved it (and their kids needed them). Or they got into poker and won a lot of money and decided, why the hell, go back to college? (A true story). Maybe in the past few years they were fired for having a bad attitude about wearing or not wearing masks and said, I’ll open my own shop. And they did. (A true story). Maybe they were plagued with anxiety and the pandemic only made things worse. Much worse. (A true story). Or maybe they were pushed out of the job market, grew brave, and started their own mindfulness coaching business during the pandemic. (A true story).
This is life after the long Covid for millions of people.