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Ankylosing Spondylitis Sick with COVID-19

One of the few upsides of living with a chronic illness is that you know your body very well. You can detect anything off or not “normal” (as if anything is “normal” when your body is fighting itself).

With ankylosing spondylitis (AS), a type of inflammatory arthritis, I live with a big range of glitches, aches, pains, and general feelings of “this is not right.” Tired like I just ran a marathon (but totally didn’t; I was sitting on the couch)? It’s probably my AS. My limbs feel like they’re made of iron? Yep, that’s my AS. And if there is ever a new pain or symptom, chances are I notice it very quickly because I’m in tune with my whole engine.

The downside: I’m prone to hypochondria. The benefit: I can catch something before it gets much worse.

An example: About two years ago, I had just finished swimming during a night class when I noticed my one rib hurt — a lot. It felt like I’d been burned or punched, or both. I thought I may have pulled a muscle, but when I lifted up my shirt, my torso felt swollen and raised. Sure enough, by morning I spoke with my rheumatologist and the pain turned out to be shingles. (Shingles, as it turns out, is a horrific nightmare.)

New Symptoms in the Age of COVID-19

Fast-forward to the coronavirus pandemic.

On March 13, I was reading a book in bed when all of a sudden I felt an off-ness. I felt dizzy, almost, as though I suddenly had a rush of blood to head. I felt a very distinct tiredness and achiness wash over my body and said to Ben, my partner, “I think I’m sick.

He had been sick a few days earlier with some basic cold symptoms, as had my roommate. Ben shook it off. My roommate was still sick. It was around the time New York City was starting to get hit hard with coronavirus cases, but before my poor city became the world’s COVID-19 hotspot.

I’d been watching the news voraciously, seeing countries like Italy and China fighting against the intense spread, watching videos of hospitals filled to the brink. It was real, and very real to thousands of others — and my personal fears grew as I felt sicker. I wondered, Did I have coronavirus, and would my body fight it off as it had colds, flus, and bouts of bronchitis before?

I’d seen the news: people with diabetes, high blood pressure, and chronic lung disease are most at risk for serious complications, but people my age were also dying or fighting for their lives on respirators.

My doctor told me that my having ankylosing spondylitis doesn’t necessarily put you into a very high-risk category on its own. But if you have additional chronic health issues or you’re on immunosuppressing medication, as many AS patients are, then you might face greater risk of getting seriously ill with COVID-19. So, it’s super valid for high-risk chronic illness patients to be worried

I didn’t take comfort in not being considered very high-risk. To be honest, being told by friends “thank god we don’t have heart disease or lung disease” did very little to make me feel better. The grief was still very real to me. I couldn’t stop thinking about those who did have heart or lung issues. I worried deeply for others, for strangers, and for my parents, both of whom are high risk.

I thought back to where I’d been and what I’d been doing weeks before social distancing became our reality. I went to a wedding in New Rochelle (which was one of the first widely known coronavirus hot spots in New York state), hung out with friends — in public! — and went to class at AquaStudio, a place where I practice aqua cycling.

I wasn’t aware of any of my friends having coronavirus, but my roommate and partner were sick. I continued to wonder, to worry. My symptoms took hold.

Making Sense of My Infection Symptoms

Over the next few days, I developed an ongoing headache, a slight fever, an extremely runny nose, a horrible hacking cough, and extreme fatigue.

My chest felt heavy, but I was also experiencing anxiety.

I talked to my rheumatologist, who told me to go to the ER if my breathing worsened. That was my plan. Otherwise, I decided to stay in and ride things out.

The CDC was asking people with mild sickness — who didn’t have trouble breathing — to treat their illnesses at home with rest and fluids. I used Mucinex, Pedialyte (I felt very dehydrated and thirsty), Tylenol, Vicks tissues and rub, and loads of vitamin C and echinacea. Last summer I’d had bronchitis for nearly three months — so I had a lot of supplies in my apartment.

A few days into the illness, I got a bit more nervous. I wasn’t getting better but I wasn’t getting worse, and my cough remained. One day I had a lot of mucus. I never got a high fever and my breathing was never strained, but it felt like the flu: aches, pains, congestion, fatigue, constant coughing, runny nose, headache, and a loss of taste and smell.

The fact is, the news was making me nervous. I saw a few people my age pass away. My Facebook was flooded with fearf-filled, painful statuses and stories.

I wondered, “Am I worse off than I think I am?”

Seeking, and Not Getting, Medical Help

My local urgent care clinic was my next step. They’d been issuing “stay at home” warnings for people with mild illness, saying in an email to patients:

If you have the primary symptoms — fever, cough, body aches, no sense of smell or taste — you should assume you have COVID-19. Don’t panic. Isolate and take care of yourself with over the counter cold and flu medicines and lots of fluids. The virus will dehydrate you, so you must force yourself to drink a lot of fluid to stay ahead of it.

I explained to the urgent care my symptoms and asked if I could be tested. They told me that my fever wasn’t high enough, I didn’t have trouble breathing, and that I wasn’t in a very at-risk group — even though the assumption was that I had COVID-19. I stayed home and quarantined myself.

They issued yet another statement via email:

We can still only test at-risk patients who are symptomatic. There is no elective testing, even for people who think they may be been exposed to the virus.

I spoke to a few friends during this time and it seemed none of them could get tested, either — even if they were sick. They all had screenings, but were deemed not high-risk enough. When I told people that I was sick and couldn’t get tested, people became irate. They couldn’t understand why. They thought everyone could just get tested. They were wrong. And people still can’t get tested.

I’ll be honest: These pokes and prods started to annoy me. If I could have been tested, I would have been. But my goal wasn’t to spend my energy re-explaining why I couldn’t get a test. I just needed to get better.

This was all before New York increased their testing capabilities and when the surge of new cases really started taking over the city.

When Anxiety Started Taking Over

So much was changing day to day. The news became more and more heart-wrenching, bringing the sorrow I’d seen in other U.S. cities and countries right here, right before me. While sick, I stayed in bed a lot, slept, read books, drank tea, and slept some more. Some nights the coughing fits were so strong that Ben would sit up and guide me through a breathing technique.

As someone who battles moderate health anxiety, I found myself falling into “what-if” rabbit holes, worrying about sudden death, obsessing about whether staying home was a bad choice or not, and catastrophizing about … well, a global catastrophe.

I found myself feeling more uncertain than I’d felt in a long time — and on an entirely new level, so I turned to meditation (the Calm app is amazing), ASMR, and deep breathing techniques. I surrounded myself with as much good as I could: breakfast by the window, a cozy space to nap, medicine within my reach.

But nothing changed the fact that people were dying and that my whole city was effectively in lockdown. Knowing that the city’s emergency rooms and doctors’ offices were jammed made me feel like the world was on pause, like I truly had to fend for myself. It’s a strange feeling, one that I don’t still have clear language for.

Even though I don’t currently have health insurance — another anxiety-producing issue that makes being sick so much worse — the sacrifice (staying home so others have a fighting chance) made me very aware of the privileges many of us have and how used to having help we are. Health care being a non-option or a last option isn’t something many people are used to. And in some ways, COVID-19 was starting to level a horribly imbalanced playing field. Where many low-income or uninsured folks ordinarily are forced to skip the doctor or go as infrequently as possible, not having enough tests meant many people were struggling to get one. (Except celebrities and the wealthy. Even the healthy ones seemed to have access. Hmmm.)

Lessons from an ‘Unknown’ Illness

It took about a week and a half of physically and emotionally draining symptoms, but I got better. The coughing stopped, the fatigue went away, and the headaches diminished. But I still have, to this day, a moderate loss of taste and smell. 

This experience, beyond anything else, has taught me to live in the moment, embrace the things that healed me, and to find new management techniques for my anxiety (if I didn’t, I’d lose it). It also taught me to acknowledge and sit in my uncertainty. As I wrote for Luna Luna magazine, an online diary community that I founded, “finding peace and stillness in the midst of chaos is a challenge, but it’s one that we must meet. We can choose to spend the entire day in worry — and it would not be invalid if we did. Our finances, our health, and our stability are at risk. But we can also choose to take back a few minutes for ourselves, to sit in silence, to just be alive, to just surround ourselves with the things that bring us pleasure and joy. “

My experience also taught me the power of quarantine. Some people might think that by not being tested, you’re in the clear. You’re not. The assumption should be that if you have COVID-19 symptoms, you have it. Even if you can’t get tested.  

If everyone who could self-care at home — with a coronavirus diagnosis or not — could just stay home, we could save lives.

 Stay home, even if you think it’s just a cold. Stay home.

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