Chronic illness in a pandemic

I am by far, not the first, or only, person to say this. But being chronically ill in the time of COVID is fucking exhausting. It is exhausting on a mental, physical and soul sucking level that I was not prepared for. But what we know now, more than anything else about COVID, is that none of us were remotely prepared for it. We are failing at managing it every day, and some of that is to be expected, and it’s definitely not a personal failing. We cannot manage this on a personal level if it is not managed on a social, societal and governmental level.

Anyway, I have a chronic illness, with a slew of ways to make me feel crappy. Every day there are at least three things that do not feel right, or well, or good. Many of these match the symptoms of COVID. I was exposed last week and felt sick over the weekend. I’m still not quite back to my “normal”. I could have a cold, or it could be a flare up of my illness, or it could have been COVID. So yesterday I stood in line for an hour to get tested. I am very lucky to have had access to that line and the test, and the eventual negative result. But standing there, in winter wind and 40 degree weather, I realized how tired I’ve become of playing this game. Is the sore throat, and body pain and headache and runny nose COVID, or just my crappy system? Oh, and how can I forget the cough and wheezing and asthma that isn’t really asthma? Every day. For two years. And I am weary.

I understand that we’re all very, very burned out by this. There just hasn’t been much conversation about us, about how this pandemic affects people with chronic illness, outside of how we’re more susceptible to serious illness and death. We’re not talking about how every time a chronically ill person is exposed to COVID they lose, minimally, a week with doctors and therapists and treatments that are needed to live. And that’s if they don’t actually get COVID. Or how disruptions to the supply chain delay treatments, medications and home supplies that make life easier, better, more manageable, or in some cases, possible. And access to in person doctors appointments, or being seen at a hospital. Or having any faith that people, in general, are looking out for us.

We are not dispensable.

One of my dearest, oldest friends has been doing #project365 #photoaday on Instagram. I decided to join her this year. My hope is that by forcing myself to take a photo every day, I’ll look up and out of the exhaustion and stress and grind of day to day living. And its working so far. Just look at the fun light in this one. This is just the weekly food shopping trip, but in a way I hadn’t noticed in a long time. (Also, none of the parking lot lights were on).

I keep telling myself to look up. To pay attention. That even though things are so hard right now, it’s worth trying to live life, rather than survive it. (Thanks Joan Didion, for that thought).

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