Loneliness is universal during a pandemic. There’s the isolation, as we’re all cut off from our family, our friends. And there’s the silence. We miss the hum of conversation at the bar, the babble of children in school hallways, and the roar of the crowd at the ball game.
But the silence I wasn’t ready for was my own. I did not expect to be cut off from my own voice, my own self, by this pandemic.
I have now been sick with COVID-19 for over 180 days. Until recently, almost nobody believed me, so I stopped even believing myself. When you tell the same story over and over and nobody hears you, you start to wonder whether the world has gone deaf or if you’ve just ceased to exist.
It started in mid-March, the same week the whole country really began to fear the virus. Everything shut down, all plans were canceled, including my family’s. We were as scared as everyone else. And that was before my wife came down with sudden exhaustion and a fever.
We were, of course, afraid it was COVID-19. But we could not get her a test. Nor could we get one for me when I developed those same symptoms, plus a dry racking cough, days later. Only people who had been exposed to a confirmed COVID-19 patient could get tested. Since almost nobody else could get tested, it was impossible to prove exposure.
When I finally did get tested, the results took almost a week to come back negative. This was not uncommon for folks who got sick in March, because of delays in testing and the poor accuracy of early tests. My 9-year-old son and 11-year-old daughter also got sick and came back with negative tests.
Within two weeks, my wife and daughter recovered. But my son and I entered an uncharted limbo.
On all the charts we see on the news, each case of COVID-19 is marked as having one of two final results: recovered or dead. The reality is that there are likely hundreds of thousands of people in this country who are neither. We call ourselves the “long haulers.”
Long-haul COVID-19 is very real. CNN anchor Chris Cuomo described having it. Ed Yong at the Atlantic has written extensively about it. Mount Sinai Hospital in New York created a center to treat patients for it. But it’s a story that’s largely been drowned out by the very tragic stories of the dying and the inane shouting about when to reopen restaurants, whether to wear a mask, and whom to trust when it comes to vaccines and treatments.
Here’s what it feels like. My cough and fever disappeared after two weeks. But I was left unable to participate in my normal life. I woke up most days with severe pain in my limbs, like broken bones. I was so short of breath I could not make it up the two flights of stairs in the house without gasping. Severe headaches would come and go. Complex mental tasks were impossible. I’d find myself reading and re-reading the same email, unable to make sense of it.
Worst was the crushing fatigue. Every afternoon I would stagger to my couch and collapse asleep for hours in the middle of the day, regardless of what impact it had on my work or my family. I might feel better for a day or two, but I would inevitably crash again. I’d send hastily scribbled emails to cancel meetings before I passed out. The food I’d bought to cook my family for dinner rotted in the fridge.
My bouncy, sweet-tempered, irrepressible son, who liked to do handstands while watching cartoons, transformed into a morose ghost slumped in his bed. He cried if we suggested he go for a walk.
As Week Two stretched to Weeks Three and Four, I started to ask for help. That’s when I discovered I had no voice.
To the medical community, a negative COVID-19 test meant that neither my son nor I had COVID-19. Period. So we were told it must be something else, and were assured that we would get better. When we didn’t get better, alternative explanations were offered. Maybe it was some other virus. Maybe it was a problem in my gut. Maybe my son had suddenly developed a new inherited condition. Maybe I just had anxiety.
“The more frustrated I became with my malfunctioning body, the more I let the doctors' voices replace my own.”
Our son’s doctor eventually signaled surrender, telling us “there’s nothing left to treat.” She meant that she didn’t know what to do. But what we heard is that we were making stuff up.
After all, pain and fatigue don’t show up on blood tests, and those tests meant more to the doctors than my lived experience. The more frustrated I became with my malfunctioning body, the more I let the doctors' voices replace my own. I wasn’t sick — I was lazy.
The world receded from me. I could not join everyone else in fighting off the loneliness of lockdown. I stopped returning concerned texts or answering the phone. I missed Zoom happy hours because I was still napping. I didn’t have enough energy to make sourdough. Our plans to take long family walks through the Wissahickon were canceled.
» READ MORE: I still have COVID-19 symptoms. Am I contagious?
With all of this, I am lucky. Lucky to have survived. Lucky to be self-employed and well off, so I could choose to work half days instead of quitting or being fired. Lucky to have a loving wife who kept me tethered. Lucky to be a white man in a culture that defers to white men, and not a woman or a person of color who, we know from countless testimonies and studies, would have been even more ignored by doctors.
Eventually, out of exasperation, one of my specialists ordered me in for a colonoscopy to see if that could help reveal what was happening. It was the first time a doctor saw me in person, and she was visibly upset at how sick I looked, as well as shocked by the lack of care I’d received. She canceled the procedure and ordered me to the emergency room for new tests, where a CT scan revealed I had damaged lungs. When my wife got a call to notify her, she cried in relief. Finally, our voices were heard.
“Six months in, I’m better but not well.”
Six months in, I’m better but not well. With the CT scan results, I was able to see a lung doctor, who gave me a firm diagnosis of post-COVID-19 damage. He said it was almost certain my entire family had the disease, despite our test results. With his help, as well as acupuncture, yoga, and vitamins, I’m starting to finally see some slow, halting improvements in my health. I’ve joined online communities full of thousands of other long-haulers whose experiences have validated my own. Now that I’ve started to believe I really am sick, I’ve allowed myself rest. My son, similarly, is starting to improve.
But nobody can tell us whether we will face permanent damage to our health. There is very little research on long-haul COVID-19, and nothing in the way of policy or programs from the government. There are hundreds of stories like mine of people being ignored or not believed by their doctors.
In our market-driven, consumer-culture health-care system, all of us are expected to navigate this frightening road alone. It’s taken me months to realize what a trap that is. How dangerous and unfair it is to ask people to make individual decisions about whether to go to work, or to school, when those decisions affect so many people in so many ways we don’t yet understand.
I am not alone. There are thousands of voices like mine — COVID-19 patients who are not dead, but not recovered. Who are still hurting. It is past time for the medical community, the government, and the community at large to listen to us, and to believe.
Jonathan Lipman is a strategy and communications consultant for progressive organizations and nonprofits. He lives in South Philadelphia.