Eight months of long Covid brought me to the brink

Editor’s Note: 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.

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.

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 or a technician tacked electrodes to my head for an EEG was exhausting. I was terrified of something showing up, yet I desperately wanted proof because with proof there might be a solution. But nothing abnormal ever showed.

Drowning in fog

In the early months, existence shrunk to survival. I was too foggy to read. I stopped watching TV, including the very news that I had worked years to be a part of. I stopped communicating with the outside world and deleted my social media accounts – they were too painful to look at. In dreams, I fell into large bodies of water trapped inside a car. It wasn’t until I heard discussions – Wait, a group stormed the Capitol? Donald Trump got impeached again? – that I stumbled through the ritual of eating. Pick up the orange. Lift, chew, set it down.

Mental health care for long haulers also cannot be a side note. The deaths of Texas Roadhouse CEO Kent Taylor and “Dawson’s Creek” writer Heidi Ferrer revealed the heightened risk of suicide long Covid brings.

“Long haulers need immediate access – which they’re not getting – to mental health care and a national fund to deal with issues caused by long Covid,” Ferrer’s husband Nick Guthe told me. “We need a bridge until research can catch up.”

I debated with myself whether to share details about my darkest moments. Often journalists may not feel comfortable sharing their struggles with mental health: stoicism can feel all but required when your job is to field tragedies daily. Some may feel it makes them look weak, or unreliable, or could be held against them. Without it, though, I wouldn’t be telling the full story.

Before my illness, I never had any thoughts about suicide. This changed after I got sick. I’m no longer in this dark place, but the months it held me hostage I inched closer to the edge than I ever wished to be. As my brain fog intensified, I developed such a palpable anxiety, it brought with it new compulsive behaviors like “trichotillomania,” or hair pulling. The days blended into one dream-state. I had only what I can describe as brain zaps. I’d wash my hair, forget, then wash it again. The further I slipped away from reality, the deeper my depression became.

I found myself researching death-with-dignity laws. I learned that Northern European countries have some of the most lenient.

Afternoons were filled with anguish. For weeks I’d throw myself on the floor, writhe there and bury my face into the living room rug. Maybe if I lay here long enough I’ll free myself from my body.

My mother had been trying her best to keep me above water, but my illness webbed out, becoming more oppressive as the weeks rolled on — when we acknowledged I wasn’t getting better. Each day she sat with me in silence.

Each night, she was my partner in pain. In the mornings, she brewed tea, prepared a plate of berries, toast and yogurt that she’d prod me to eat. She quietly went through each room, removing the clocks on the wall after I casually mentioned their ticking made me jump. In the afternoons she sat patiently over the bathtub running her hands under the spout, dropping bits of lavender oil into the water. Then, she’d peel me from the mattress and I’d stagger in.

It was gut-wrenching to watch my family desperately search for answers and after most visits, becoming just as disappointed when the response from medical health professionals was “We just don’t know enough about Covid-19 yet to help.” Long Covid is not the typical medical crisis but a slow burn of an illness – something emergency medicine has little use for.

The abrupt deterioration of my mental health from this is not unique. Many on Body Politic, an online support group for long haulers that’s helped me, shared that they, too, had thoughts of ending their life.

“I’m against suicide but I told my partner to hide our gun from me,” Angela, a mother of two young children who asked to keep her last name anonymous, told me in January. “I didn’t trust knowing where it was.”

Research and mental health care lags behind patient experience

Science is catching up, slowly – but it needs time. Research is pointing to neuropsychiatric changes in Covid-19 survivors potentially due to inflammation or a disruption of blood flow to the brain. There are theories that the virus affects serotonin and dopamine neurotransmitters. According to a study at Oxford, Covid-19 may change the physiology of the brain. A recent case published in the Journal of Psychiatry Neuroscience and Therapeutics reported “autoimmune-mediated psychosis” after a 30-year-old without previous health conditions developed delusions.

But we need more.

It was a two-month wait to see a psychiatrist. This is unacceptable. Having access to psychiatrists and psychologists is critical to recovery. And when we’re seen, approaching long Covid with the conventional assessments historically seen as “hysteria,” or slapping on a psychiatric diagnosis without considering broader multi-system involvement is what will keep long-haulers sicker, longer.

That’s not to say chronic illness doesn’t cause psychological distress like post-traumatic stress disorder (PTSD) and depression, but experts must be aware of the constellation of post-Covid symptoms – there are many and the challenge isn’t easy – then assess from that starting point.

Discussions with long haulers often end in, “I’ve given up on doctors,” or “I’m just glad to be alive,” or even sometimes on a bad day, an exasperated, “I’m so fu**ing tired of this.”

We’re the first of our kind. We’re bound together in our collective trauma – the one that’s been invisible to others. And our numbers are growing.

Today, I still experience severe vertigo, fatigue, brain fog, exercise intolerance, screen sensitivity, insomnia and migraines.

I think of the night before Christmas – the night I surrendered after, at that point, dealing with these mysterious symptoms for four weeks. The night I assumed that whatever was wrong with me was probably going to kill me.

I sat hurriedly scribbling out notes to my family. The smell of cinnamon and lilies from the get-well bouquet my “OutFront” team sent filled the room. Hmph, I can smell again, I thought as I feverishly tried to form the sentences that my family would read. Putting thoughts into words was like wading through molasses. I just couldn’t do it. So, I plainly thanked my mother, father and husband – and I planned. I wrote that I wanted my body to be donated to science. It haunts me to know that, at that moment, I was still worried about being missed as a Covid-related death.

Yes, I’m glad to be alive too, but I want more for us. With support from our health care providers and policymakers, I want those living in the shadows of long Covid to come out of a dark winter and heal in the sun.

If you are struggling with depression and suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-8255. The International Association for Suicide Prevention and Befrienders Worldwide also can provide contact information for crisis centers around the world.