In July of 2022, I was at camp – the same one I went to as a kid, the same one I had come back to as staff nine years later in 2021. That first summer back, when the world was still half shut down and everything was in flux, was the best and most intense summer of my life. We were totally locked down – nobody in, nobody out – for the whole summer. We tested biweekly for the first week of the session, masked and distanced, and then we got to have an almost normal summer once we were sure there was no COVID on camp. And there wasn’t; we were the only camp I know of that had zero COVID cases in 2021. It felt like a miracle.
But this next summer, 2022, was different. We had a new director who wasn’t particularly worried about COVID, so despite the science, we had a much less careful summer – and whether because of that, or because the current strain was just more infectious, we had a lot of COVID cases. My roommate got sick, tested positive, and went home… but not soon enough to save me. I got sick enough that my supervisor insisted that I go to the infirmary and stay there until I was well again. I was there for three days.
And I was never well again.
Later that summer – and I remember this so viscerally – there was a day where I walked out of my room and suddenly felt as if I had taken an edible. The whole world seemed to divorce itself from my reality. If I had in fact taken an edible, it would’ve been pretty fun, but I hadn’t. I was scared and upset and couldn’t ask for help; the director was already on the warpath about weed, so even though I hadn’t taken anything, I was scared I would somehow get in trouble. (More on that another time.) It faded after about an hour, but the fear remained.
The first time was the worst time, but it kept happening. As I write this, almost two years later, it’s happening again. It turns out that, while my body fought off the active infection well enough, I had contracted long COVID, in which the virus remains in the body and affects various bodily functions, including sleep, digestion, neurological and cardiovascular function, and more.
When I first realized it was long COVID, I decided not to stress too much. It wasn’t ideal, but it wasn’t too bad, just occasional lightheadedness and brain fog. I could still function, and everything I had read indicated that I would get better. Instead, I got worse. As a result of long COVID, I developed postural orthostatic tachycardia syndrome (POTS), a disability in which your heart speeds up disproportionately when you stand up too quickly or too long. I get dizzy and lightheaded, I frequently experience brain fog, I have severe insomnia, my fatigue levels are through the roof, and my digestion is touchier than ever. In short, I’ve gone from mild-to-moderate disability to severe and constant impairment.
Finally, in September of 2023, it became apparent that, at a bare minimum, I needed to tell my doctor and get accommodations at work. By then, my POTS and insomnia were pronounced and my lightheadedness had increased from occasional to weekly. Now, seven months later, it’s even worse – I’m dizzy and lightheaded almost every day, I sleep between three and five hours most nights, and I can hardly even do the bare minimum, let alone the things I enjoy. (An anecdote: nine days ago, I was walking at a relaxed speed on level pavement, and my heart rate hit 119.)
And then, finally, I got into the long COVID clinic I’d been trying to contact for six months. They immediately referred me to a pain management specialist, telling me that there was a treatment I could get that might mitigate a lot of my symptoms, and the world seemed to brighten. I got an appointment for the pain management specialist for a week later and walked on air for the whole week. The morning of my appointment, my therapist told me that she was on the same treatment I was going in to talk about and that it was working great for her, and I floated even higher.
“Well, it sounds like you definitely have long COVID, and this treatment could have a lot of impact for you. There are a few workups you’ll need to get done first. But I should tell you that this treatment is still considered experimental, so most insurance companies aren’t covering it. Of course I’ll appeal it if they don’t, and you can too, but it’s likely that you would have to pay out of pocket. It would be a thousand dollars, and we’re not sure yet how long the treatment lasts; some people are good after one dose, but others need several. And if you got reinfected with COVID, you would likely need to get it again.”
I crashed to the ground. A thousand dollars? A thousand dollars, likely more than once? A thousand dollars, when I had been without income for three months and was only making $400 a week before taxes? A thousand dollars, when I needed to buy a car? A thousand dollars, for something that might not even work?
A thousand dollars seems so little to a lot of people. If you make $100k a year, a thousand dollars is half of your weekly paycheck. If you have a good job and good savings, a thousand dollars is a small price to pay for your health. But it’s not small for me. And in order to spend that thousand dollars, I have to make enough money to spare it; in order to make that money, I need to be well; in order to be well, I need the treatment; in order to get treated, I need a thousand dollars.
It shouldn’t be this hard.
It shouldn’t be this hard to get better from something I couldn’t avoid. It shouldn’t be this hard to get help. It shouldn’t be this hard to survive.
Right now, I’m working fifteen hours a week, because fifteen hours a week is about what I’m capable of. I’m looking at full-time jobs, but it’s terrifying. Right now, I have a reasonable amount of job security for the next five months, and maybe beyond that if my temp position becomes a permanent hire. It’s not a job I’m passionate about, but I’m not struggling to do it. If I take a full-time job, how long will I survive? Will I make it long enough to afford treatment? Will I burn out and have to start over? If I get worse, will I have been there long enough to get medical leave? Will medical leave even cover something so nebulous and new?
I’m turning 27 on Sunday, and I feel like I have no security in my life right now. Shouldn’t I be stable by now? Shouldn’t this be easier? But it isn’t. And somehow, I’m still one of the lucky ones.
It’s not a crime to be sick and poor. It’s not a moral failing. It’s just life, and sometimes life is hard. But it shouldn’t be this hard.
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