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How To Be Chronically Ill During A Pandemic

Allison Bird Treacy
Mar 23 · 5 min read
My Bag Of Shit I Can’t Live Without — AKA All Of My Rescue Meds For Normal Circumstances
  1. Before things seem truly urgent, drive several hours for a medical test. The hospital is already performing extra screenings, but in a cursory fashion — no one looks at you or your wife twice as you head to the radiology floor. Marvel at the hand sanitizer dispensers, which offer up a moisturizing formulation. Feel grateful for the small, isolated waiting room devoted to those having your specific test.
  2. While in the waiting room, discover that church services, still set to go on when you left home two hours prior, have been cancelled for the next two weeks. Begin wondering whether you should go to physical therapy the following week — the waiting room is crowded and in a primary care office. Assume you can go to regular therapy — the waiting room is mostly empty.
  3. Evaluate your medications. When will you need to go to the pharmacy again? How many prescriptions can you fill at once? Refills never seem to line up. What about that one prescription you can never get at the local pharmacy, the one that requires going to the larger, nearby city?
  4. Your therapist calls to ask if you’re coming to your next appointment. You’re welcome to, but the office is closing at the end of the week and switching to telehealth. Do you want to do telehealth? Be grateful you’re mentally stable enough to handle this switch. Remember how much you would have cried just a few years ago at the prospect of this change.
  5. Call your physical therapy office and cancel your upcoming appointments. Recall that during your last appointment, your PT had to realign the vertebrae in your neck so that they weren’t twisting into your esophagus and trachea and causing pain. Wonder how long your vertebrae and ribs will remain in place before they start causing unbearable pain again.
  6. Remember that you’re supposed to start a new interventional therapy. You have the referral the phone number. Set it aside. It will likely be months until you can start that treatment.
  7. Your spouse is essential personnel. In other words, though there are special protocols, she is still coming into contact with the general public. The general public does not seem to realize that their dog’s booster shots are not in fact urgent considering the current circumstances. Everyone on staff tries to convince wellness visits to stay home, but people are incorrigible. When she comes home, your wife immediately removes her scrubs and washes up to minimize potential contamination. You both monitor coworker health carefully.
  8. Anxiety about the spreading virus invades your body. Your brain is calm because you are used to living with a degree of crisis, but your insomnia worsens. When your insomnia worsens, your daily pain worsens. When your daily pain worsens, your insomnia worsens. Prepare for everything to spasm and know that you will not be able to see a doctor to address these problems without putting yourself at more significant risk.
  9. Your test results from just before everything came crashing down arrive in your inbox. They’re normal — mostly. As in, what they were testing for was normal, but there are some other notes, including one involving your lungs. The current crisis is respiratory and your immune system is already malfunctioning. Discover in the report that the bottom of your lungs don’t sufficiently inflate. Your decades long inability to take a deep breath suddenly makes sense. You chat with another member of your patient community about your lung health and realize that you also experience asthma symptoms. All of this is normal for your diagnosis, and yet you’re reminded that you can’t avoid your long list of vulnerabilities.
  10. The news tells you there’s a shortage of albuterol inhalers, and two days later you have to use yours. Feel grateful that it’s still mostly full, but worry that anxiety will making your allergic breathing problems worse because that’s actually how your ill-wired immune system works.
  11. The news says the virus isn’t airborne, so don’t wear a mask unless you’re the one whose sick. Then the news changes its mind. You already carry an N99 mask at all times — one less thing to worry about.
  12. Some of your bones pop out of place because you sat awkwardly. Yes, really. You’re not just sore. A rib juts slightly from the center of your chest. You get a stomach ache and wonder if it’s just another day, if you’re having a histamine reaction to leftovers because you’re cooking dried beans in bulk, or if its something else entirely.
  13. You talk to all of your sick friends. Some of them are deeply angry. Many are afraid. Most are frustrated that all the things they asked for — we asked for — all the remote access tools that would have allowed us to be more a part of the world are suddenly available. Now we all know why they weren’t available before and companies and schools can’t pretend otherwise. We imagine a future in which we will force them to do more for us, but worry we won’t survive to see it.

If you don’t feel overwhelmed yet, you should. We are. And this is just one way to be chronically ill in the midst of a pandemic. My primary meds aren’t facing a shortage because suddenly they’re part of experimental drug trials. I don’t rely on PPE to perform my daily activities safely. I don’t live with many of the risks that other chronically ill and disabled people do, and yet I think about how I was sick for two months because of the allergic cascade the flu vaccine caused this year. How I’ve only recently started to get back on my feet and regain my stamina after getting sicker a few years ago. Could you live with that anxiety?

Every night, I lie awake for hours despite a range of sedating medications. I wonder if I should take my anxiety medication, wonder if I’ll be able to get more it as the crisis continues. And I keep running the above list, adding to it, wondering what will fall apart next, feeling as though the possibilities are endless, the disasters the entire contents of the horizon.

Not (Just) My Story

Navigating Disability In Context

Allison Bird Treacy

Written by

Allison Bird Treacy is a poet, essayist, and professional ghost. You can see more of her work at https://abirdwrites.wordpress.com/

Not (Just) My Story

Navigating Disability In Context

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