You’ve been feeling a bit off lately. Nothing too specific, just general malaise and fatigue. You’re probably just stressed, overworked. Or maybe you’re just getting a cold. But then you start hearing stories of some illness you don’t know anything about. You start googling and don’t know quite what to think… Depending on the source, it’s either a horrifying disease, you definitely have it, and you’re going to die for sure, or it’s really not quite that bad and you probably don’t have it anyway. So, you go to work. You find your anxiety is a little heightened, and your brain is distracted and foggy. You start to feel insecure, that you’re not quite doing your best work. Because of this added anxiety, you realize you’re getting extra jumpy. The lights flicker for a second, or you hear a siren outside, and you feel as rattled as if you’d almost been hit by a car.
The next day, you feel significantly worse, but it’s probably just the stress and you don’t want to inconvenience your coworkers, so you go in. Ok, it’s a few days later and you’re DEFINITELY not feeling well, but it’s probably not a big deal, and you’re still worried about making a bad impression at work, so you put your head down and go in. You desperately try to make it through the day, but you’re so tired, your body aches, you can’t think straight… you accidentally fall asleep at your desk after lunch and wake up in a panic, sweating profusely. You’re SURE you're not putting anyone else at risk, it’s just tough to get through.
But within a few days, other people are staying home from work. They have a cold, but they’re going to play it safe to not bring their germs into the office. People start avoiding you, worried about what you’re hiding. You finally make the decision to stay home.
Once home, your adrenaline goes down a bit, and you realize just how crappy you feel. You stay in bed, your whole body feeling like you ran into a brick wall. You spend days just laying there, not having energy to do anything. You start to feel an emotional roller coaster.
Guilt -- I should be at work. This is ridiculous. I’m inconveniencing everyone.
Fear -- how long is this going to last? I can’t keep this apartment if I don’t make enough money. What if I am really sick? Am I going to die or be permanently impacted?
Anger -- how come all of those people who stayed home because of a cold didn’t seem to take it this hard?
Grief -- I miss my friends. I miss my life. I miss my JOB of all things!
Boredom -- honestly, if I have to look at these walls another second I’m going to spin out of control.
Isolation -- I haven’t interacted with a single other person in a week. Everyone is doing their own thing. I don’t want to inconvenience anyone. But I’m so lonely…
One day, you realize you’re getting better. Did you overreact? Was this whole thing just a cold and you should’ve been in? You have started getting emails from work about your absence. You’re worried about having used up too much sick time. Is everyone at work judging you for being out so long? Your doctor says you should take it slow, but everyone else is back at work...
Sound familiar?
No, I do not have COVID-19. But this is my story nonetheless. It happened several years ago, when I had my first job out of grad school. I started feeling worse and worse. My doctors said I was fine, so I went to work. But I could barely make it through the day. I would fall asleep at the wheel on my way home. I couldn’t imagine taking time off when I felt sick because, well, I was always sick. When others took a few days off for a bad cold, I felt so angry. When I finally got so sick that I had to take off time from work, I felt fear, isolation, and immense grief for not being able to do any of the things I loved.
The bottom line is, I had to constantly make this decision:
Do I stay home and risk losing my job, or go to work and risk my health, emotional well-being, and safety?
It’s been fascinating to see the healthy, able-bodied people around me grapple with COVID-19. Issues of access, of whether and how you could still participate and get paid without risking your health have been front and center. People have struggled so acutely with isolation. Platforms for virtual meetings, karaoke nights, happy hours, game nights, and more have popped up everywhere. The government is planning to spend trillions of dollars to help the people who can’t get to work. Everyone pours out love and support to one another on social media. People are calling to check up on one another, offering to go for a walk or a skype date or to hang out in whatever way feels comfortable right now.
I have felt a sense of unease for awhile. A separate sensation than the anxiety of being immunocompromised during a global pandemic. I couldn’t put my finger on it until I saw a couple of messages floating around facebook:
and:
I realized -- that’s it! I feel impatient with people navigating something so new and scary, because I’ve been here before. I roll my eyes at the grief of others, because I’ve already processed through those stages, years ago. I feel resentful at the wonderful BEAUTIFUL things people have been doing for one another, because where were they when I and so many others had to stay home for a chronic illness that won’t be old news next year.
Where was our social recognition? Where were the creative solutions for working from home, the understanding from employers? Where were the genuine greetings of “stay safe, stay healthy?”
I don’t want to feel this negativity. I try to be pretty positive, to live in the moment, to celebrate the love and goodness when it pours out of people. But I also know that I am not alone in this resentment, and that the shame it fills me with will only dissipate if I can express it, expose it to the air.
Obviously all of this has also been compounded by the other complications of being a spoonie right now. My immune system isn’t 100%. More than this, my illnesses can be made permanently much worse by physical traumas such as a serious infection or virus. I have never felt as good as I did before my brief exposure to Lyme disease when I was 11. I know people with my conditions who got a bad virus and were bedridden for years, never fully recovering. So yeah, I’m a bit touchy right now. All of my many emotions are heightened.
The rhetoric around “well, it’s just old and sick people, so you’re fine” didn’t particularly help either. Not only did it reinforce that I’m more at risk, but it also made me feel invisible or worse, unvalued. When I go outside and people walk right past me or stand next to me at an intersection (with me obviously lunging to the side, trying to maintain 6 feet), it makes me want to scream. I’m working on getting “immunocompromised” badges made and, frankly, they cannot arrive soon enough.
Also -- let’s talk about the hoarding. I do not feel safe, obviously, going to a grocery store to get toilet paper the second it arrives on the shelf. But it’s getting snatched up so fast that there’s no way Instacart or some other delivery platform will get any for me. Let me say bluntly: I have three diseases that all affect my GI tract, and are all worsened by stress. I need toilet paper more than you. Yet I have 2.5 rolls left and, despite trying for weeks, have been unable to get more. I also have very few foods I can eat, and I have to eat everything fresh and organic. It seems, however, that the foods I can eat are desirable to the same people buying all the toilet paper. It has been so difficult to find the foods I need to stay healthy. I have had to settle a lot of the time for other foods. This only exacerbates my illnesses and, you guessed it, causes me to use more toilet paper. It’s hard to not feel frustration and the deep, primal fear of running out of safe things to eat.
Yet, despite all of this, I’m doing ok. I’m used to staying home. I’m used to not being able to see any friends -- although before it was because I had no energy and now it’s because I’m afraid of everyone. But yeah, I’m a champ. And my spoonie friends are also weathering the storm ok because they too have had to self-isolate before. I’ve seen so many articles along the lines of “Tricks of how to survive COVID-19 boredom -- from a homebound spoonie expert.”
So… I guess I’m not sure what my point is with this piece. It’s more a collection of musings and reflections than anything else. I think my hope is for visibility, for people to realize that many of us have been living like this all along, and that your actions can have a huge impact on our safety. I hope our capabilities will be more valued in the future, as people realize how much good can really be done from home (let’s face it, even from bed). I hope that processing this with you all will help me to feel more of the positive feelings of love and gratitude that I really do feel, and less of the anger and resentment.
Thanks for reading <3 Stay safe, stay healthy.