01 Morgan Stephens long-covid

Eight months of long Covid brought me to the brink

Updated 10:56 AM ET, Fri July 23, 2021

Morgan Stephens is a journalist living and working in Los Angeles and a production assistant for CNN's "Erin Burnett OutFront." Her writing has appeared in CNN Politics and Huffpost. She covered the Trump administration in 2019 with the CBS News White House unit as an intern. Follow her on Twitter. The opinions expressed in this commentary are her own. View more opinion on CNN.

(CNN)As Americans continue to become infected with the new highly contagious Delta variant of the coronavirus -- and every US state and Washington DC sees a rise in Covid-19 cases, about 10%, doctors say, will go on to develop what I've been struggling with for months: long Covid-19 — or lingering symptoms post-infection that are difficult to diagnose.

Both my experience and the stories I've heard of many Americans continuing to deal with the mental and physical anguish that comes from being a long hauler should motivate Congress to support bi-partisan initiatives like the COVID-19 Long Haulers Act, which died in the last congressional session but was reintroduced this year. Covid-19 will continue to cause havoc until more Americans get vaccinated.
Morgan Stephens
For me, the ordeal started in November, four weeks after I'd contracted Covid, two weeks after I was no longer testing positive and months before vaccines were widely available in the US. My body shook for five days before I checked myself into a North Carolina hospital. A surge of adrenaline coursed through me as I slogged through the packed waiting room and curled up on a linoleum bench to wait for someone to tell me what was wrong.
Two nights earlier, what felt like a brain zap jolted me awake. I staggered into the hallway on a funhouse tilt. My world, a Salvador Dali painting, distorted and oozing. Speak, I told myself, but the words came out drowsy and slow.
Only a year before, I was reporting on the Iowa caucus, gaggling with presidential candidates, interning with the White House press corps and becoming the first in my family to graduate from college -- at the top of my class. Despite taking precautions, my mother, father, husband and I contracted Covid-19 in November, six months after I landed a job at CNN.
Unlike many of the 181 million, globally, who survived coronavirus, I did not get better and my life did not return to "normal." In fact, what came next was much worse, even if it can't be detected by tests.
One month later and I was in the emergency room. "Your blood work looks great," the doctor said.
"I have this shaky, electric feeling in my stomach," I said. "I can't think. I can't sleep."
The doctor asked if I had seen the latest "60 Minutes" with Anderson Cooper on "long haulers."
"I've seen it. I work in news."
I had been producing coverage of post-Covid-19 symptoms with the "Erin Burnett OutFront" team. I had watched the episode, thinking this was only something that happened to other people. What others described in our interviews came to mind: "tremors," "brain fog," "paralysis."
She told me I was the third person she'd seen with this. The others landed in her emergency room two and three months post-infection. I was four weeks in from my initial infection.
The doctor handed me my medical papers and discharged me: 30-year-old female. Post-acute Covid syndrome. "Watch that episode," she advised, then left. I started to cry.
The tremors and vertigo had intensified. It'd been a week without sleep. And, with no medical treatment, I was essentially charged thousands for an emergency room visit and given a prescription for Anderson Cooper.
When it came to long Covid-19, even in America's hospitals, there were no experts to be found.
Today, more than eight months later, the breakdown of my own physical and mental health has given me front-row access to the long Covid-19 crisis in a way I never imagined. The waves of illness have not let up. I'm not alone.
A recent FAIR Health study of Covid-19 patients -- the largest to date, analyzing the health records of nearly two million people who have been infected with the virus in the US found that hundreds of thousands have sought care for new health conditions after their acute illness subsided.
If our illnesses extend for more than a year, we'll need to file for federal disability through the Social Security Administration. More businesses will need to pay sick employees and the US health care system -- which has health care workers leaving or considering leaving the profession altogether -- will continue to be stretched beyond its limits. More congressional funding should go to efforts that are monitoring illnesses associated with long Covid.
Since December, I've seen 15 specialists, received eight scans, visited three ERs and -- even with insurance -- spent $12,000 seeking a return to normal life. Since February, I moved across the country to receive treatment from a post-Covid recovery clinic at my alma mater, Keck School of Medicine of University of Southern California. The clinic refers its patients to specialists depending on their symptoms and provides a social worker. I receive weekly treatment from a physical therapist, occupational therapist and neurologist there.
Other than the vague "post-acute Covid syndrome," a term that shows up more than 100 million times in Google searches, I've been given no diagnosis. This might be because clinical guidance for physicians has yet to come.
I've had more than 50 symptoms ranging from cognitive impairment, insomnia, vertigo, extreme light and sound sensitivity, and fatigue to convulsion-like shaking, slurred speech, hair loss, muscle weakness, anxiety. The majority occurred simultaneously. The ability to write marks a significant improvement; for six months I couldn't do it. Still, I haven't had a symptom-free day since November 6, 2020, the day I tested positive for Covid-19.
One of the most sinister things about long Covid-19 is its ability to hide from testing. The very nature of our syndrome compels us to question ourselves ad nauseam until we capitulate in exhaustion. OK, then why can't I walk without panting? Why can't I follow along in conversations even though listening is what I do for a living?
The mental gymnastics I went through each time the cage cha-chinked shut around my head for an MRI