I Have Long-Haul Covid With An Autoimmune Disease And I Feel Like A Zombie

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woman at home

It was March 2021 — a full year after the pandemic upended the world as we know it — when I got sick with COVID-19. I'd been able to avoid the virus for a whole damn entire year, but somehow (how?!) I contracted it almost a year to the day my city, New York City, became the epicenter of the virus.

To make matters worse, I was scheduled to receive my first COVID-19 Pfizer vaccination a week after I recovered from the virus. What the hell?

I'd watched as my city put bodies into refrigerated trucks, and turned the Javitz Center, the place where I graduated from my Master's program, into a makeshift hospital. It was spooky, watching my lively city turn into a silent shell of itself, filled with ghosts.

And it was heartbreaking watching people die, grieve, lose their jobs and homes, and fear for their lives and the lives of their families.

My boyfriend stopped working for most of 2020 and I was — and continue to be — ceaselessly worried about my parents, both of whom are high-risk. My father nearly died after a botched surgery and COVID-19 protocols meant I wouldn't have been allowed into the hospital even if I were in the same state as him. My aunt later died of COVID-19, sadly.

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I worried about myself, too. I have an incurable, inflammatory, and degenerative autoimmune disease called Axial Spondyloarthritis, or Ankylosing Spondylitis. My immune system is broken, meaning it attacks itself — causing chronic pain, mobility problems, stomach issues, chronic fatigue, eye disorders, and cognitive issues.

My disease is an asshole; it spends a lot of its time trying to fuse my spine. Patients take a few different kinds of drugs for this, but the main drugs are called Biologics (which are super-fun drugs you inject into yourself, #ugh). These suppress your immune system so that it doesn't spend as much time fighting itself. I go into periods of remission and then I feel awful again.

COVID-19 was extra risky for folks on immunosuppressant medication, which is my rheumatologist told me to not take mine, Cosentyx, when I got COVID-19.

Though researchers aren't entirely aware of the connection between COVID-19 risk, autoimmune disease, and vaccinations (partially because patients with autoimmune diseases aren't part of many trials), there is an extra risk.

In March 2021, when I got sick, I had just moved apartments. I was stressed (moving during a pandemic isn't ideal, just FYI) and exhausted. I'm sure my immune system was made even weaker by the nightmare that is moving into a narrow Brooklyn brownstone on a one-way street. Just a few days later, I got tested so that I could see a pregnant friend. At that point, I felt fine.

And then the rapid test came back in big red letters: POSITIVE. Another PCR test confirmed it: Positive.

I told everyone I had come in contact with (two friends also had it) and began my quarantine. By day four I was as sick as can be. I had an oximeter and thermometer to keep track of my breathing and temperature, and I lived on my couch, unable to think or move or talk, or function. No taste or smell. Lots of pain. Weak as hell.

My boyfriend listened to my breathing in the night. Friends called, and their behavior was strange; they spoke to me as I might die.

I was okay by day 11. It took me a long time to catch my breath again. Then I got chronic bronchitis — for months. From April to July I coughed endlessly. My periods became unbearable. By the end of July, I went to the urgent care clinic with swollen glands and a heavy chest. I told them I'd been battling ups and downs for months. They told me it could be long-haul COVID, my autoimmune disease, or some combo of both.

We all love a mystery, don’t we?

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The fatigue worsened through August and now into September. I started realizing that my brain was coming undone. In fact, my general forgetfulness and aloofness have become a sort of running joke with my boyfriend. He says, "you literally just asked that," at least once a day to me. He’s supportive and joking about it actually helps.

I ended up joining a long-haul Covid group on Facebook. I had more questions than answers, and it seemed like everyone was in the same boat: Why can't I think? Why am I always tired? Why do my joints hurt? Why am I sad? Why do I have skin rashes? Why can't I take a deep breath?

So many people felt like me.

And just like many of the others in my group, the vaccine never really helped with post-COVID-19 symptoms. In fact, I think my brain fog and fatigue have gotten worse. It's a crapshoot as to whether I feel like a total trash-fire zombie or whether I'm functioning on any given day.

And I'm an ambitious, hard-working, creative person with a lot on my plate. I know it sucks, but I like being busy. I do not like living like I am walking through molasses, or, as I described it on Facebook, "like my head is in a cocoon of fuzz like I’m submerged in a jar of honey."

Having ankylosing spondylitis has made it hard enough to think and move and do things normally. But post-COVID? Noticeably worse. Just the other day I said to a friend, "I feel like I'm dying." Histrionic, sure. But sometimes it feels like I'm crumbling into a pile of human goo. Just exhaustion embodied — and it's been six months since I recovered from COVID-19. Six months.

So, why did this happen?

I work as a freelance medical writer, so I ask a lot of questions. I started wondering if maybe there was some mass psychosomatic experience occurring. Were we all just imagining vague clusters of symptoms ... together? Or was it the collective, relentless trauma of the pandemic that finally broke us, turning out bodies into shells of our former selves? Were our nervous systems shot?

It's tempting to rely on such ideas. After all, we know so little about this virus in the end. But the symptoms are real and the complaints are real and the virus is very real.

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According to the medical journal Lancet, "As the COVID-19 pandemic continues, the need to understand and respond to long COVID is increasingly pressing. Symptoms such as persistent fatigue, breathlessness, brain fog, and depression could debilitate many millions of people globally. Long COVID is a modern medical challenge of the first order."

I worry about people without access to healthcare.

I worry about communities without resources.

I worry about chronically ill and disabled people.

I worry about the selfishness of the unvaccinated.

I worry every time I take my mask off somewhere, even if they have checked my vaccination proof.

I worry about my family getting COVID or me getting COVID again.

I worry about my friends and their families.

I worry about how we haven't truly begun to mourn, how we have to integrate this into our daily lives. I worry about what we don't know.

I'd like to feel better, like my autoimmune disease isn't battling with this mystery virus. One issue was plenty.

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Lisa Marie Basile is a writer, editor, and poet who founded Luna Magazine, an arts, culture, and social issues site for women. She's written for Good Housekeeping, The Huffington Post, Redbook, xoJane, Blisstree, and more. Follow her on Twitter.