Being Chronically Ill in the Days of Coronavirus

How many of you have been frustrated with “ableds” or healthy people when they take their able-bodiedness or good health for granted? When they drink too much, when they brag about being super lazy, when they brag about being super productive...

It’s not like we’re targeting the healthy or anything. It’s simply part of the mourning process for us. It’s a part of letting go of what we used to be able to do, or what we took for granted, and getting used to our limitations. (Some people use the phrase “our New Normal”...I do not like this phrase and I will not use it. If you like it, go ahead.)

I, for instance, was very adamant about physical fitness before I got sick. I used to run about 10-14 miles per day and lift weights, and I was in the best shape of my life.

It took me a very long time to let go and realize that I couldn’t do the things I used to be able to anymore, and I took my frustration and anger out on other people who *could* work out. I was especially angry with those who could work out, but didn’t.

If I were still well enough, I’d be in the gym every day, before and after work, keeping my heart and lungs healthy, and my buns tight, haha. So whenever one of my friends complained about going to work out, instead of seeing it from their point of view, I took it as a personal attack, and thought Gee, I wish I still had the choice of blowing off the gym.

...

I don’t know if you all have noticed since the pandemic has started, but there has been a shift. These healthy, able-bodied people—people who used to take their own bodies for granted, and seemed to think they were invincible, now were much more precious with their own well-being. They had started to take us for granted.

Suddenly wearing a mask or staying inside for a couple of weeks was the worst thing in the world. They couldn’t believe that we would expect them to protect us.

Them: ”Just stay at home and you’ll be fine.”

Us: “Ok...but we don’t all live alone in a bubble together, you still need to wear masks and social distance to keep our loved ones and caregivers safe...”

Them: *blank stare*

Don’t get me wrong, I’m not saying it wasn’t hard for people who are very outgoing to not be able to be social. But if the price for going out to a bar or having a party is that you became a carrier, then gave #covid19 to a caregiver of an immunocompromised person, and that person passed away...was it worth it?

Disappointingly, over and over I’ve asked that question, or some variation, and I was met with several different types of answers:

1. it’s not any more harmful than the flu (wildly inaccurate, obviously).

2. you could never prove it was me.

3. that person should have just stayed home then. (They did, though...)

4. no one lives forever.

5. (and my personal favorite) I’m ok with a certain amount of deaths, they’re going to happen in a pandemic anyway.

I was also personally attacked, with people trying to tell me that I had never cared about the health practices of other people before now, and I’d definitely never gone out with a mask in public. Well...I definitely wore one at the hospital when I went into patients’ rooms who’d had chemotherapy, but besides that I also wore one whenever I had walking pneumonia (even to a friend’s wedding and reception), and most recently I wore it when I had a stem cell treatment. But they know better, right, these strangers on #Twitter ?

i suppose what hurt the most was just how expendable it seemed those of us with compromised immune systems and other underlying conditions actually are to the masses. Normally, we’re completely ignored when we aren’t being exploited for some type of inspo-porn or fundraising.

Heck, I even had a “friend” who tried to use my having surgery to get out of work because she said she had to pick me up from the hospital and take care of me for a few days. The only reason she didn’t get away with it is because my sister was her director and heard it trickle upward what a “selfless, caring young woman” she was. She really was planning on spending that time with her boyfriend, another friend of mine (may he RIP). This wasn‘t her first or even second instance of dishonesty, and she was fired. She never even called to see how my surgery went.

Compared to now, though, being sick or disabled was like a picnic. Now it seems like able-bodied people would be happy to toss you straight into a wood chipper to save themselves, or to keep the lifestyle to which they’re accustomed. And I don’t mean every able-bodied, healthy person. I won’t paint with that wide of a brush. But I can’t shake the feeling that if we were in some type of ancient culture where they, for instance, threw the virgin into the volcano to keep it from exploding, we’d be that sacrifice.

All these amateur statisticians all of a sudden screaming “99.9% survive!” Are desperately clinging to the hope that you’ll get it, and your sick friend will get it, and enough elderly and others with underlying conditions will get it that we’ll fill up that “.01”% (not accurate AT ALL) and he’ll be safe and sound in his wildly inaccurate statistic he heard God knows where.

I feel as though this attitude prevailed more so in the beginning months of the pandemic. Especially when there was not a strong response from the government. I don’t want to make this blog or podcast too political. It doesn’t need to be.

Now that over 300,000 Americans have passed away, and we continue to have soaring numbers, and our hospitals continue to be overwhelmed—I don’t hear from too many people that this is a hoax. Or that it’s just the flu. Or that I should just stay home.

What frustrates me now is the nonchalance with which people who one took the virus protocols very seriously are starting to act. This has actually happened in my own family. For the holidays this year, my husband was actually going to fly to Alabama and then drive back with his sister so she could be here for Thanksgiving.

I love his family, especially his sister, but I was dead set against him traveling. And his family is not a part of our “bubble”. My family is, because they live very close to us and my mom helps me a lot (taking me to doctor appointments, dropping things off from the store, helping me with cleaning or showering if I need it), and I felt sort of guilty about that.

His mom has some health issues as well, though, and his dad decided he didn’t want anyone coming there for Thanksgiving. So we went to my parents’ house. Then for Christmas, my husband decided he wanted to go to his parents’ house. I said no. They are not in our bubble, one of his sisters is an EMT (which #grateful , and she’s awesome) who has a long distance relationship with a #nurse (again, #heroes ) , and we just aren’t around them enough to know what they’re doing, how they’re feeling, etc.

He didn’t listen to me, and went over not once, but twice this week before today (Christmas day). So we get there Christmas afternoonish today (today it was just his parents and youngest sister for a small lunch, and my husband had already been there all week and I figured it would be ok but I still felt like it wasn’t right to go) and his mom sits us down and tells us that his sister got sent home from work (she was supposed to have a 48 hour shift) because, guess what?! **her girlfriend tested positive for covid YESTERDAY.

Turns out his mom knew this before we headed her direction, and decided not to tell us until we got there because “Paul had been there all week already”. I piped up with a “but this is 3 more people you’re exposing *me* to that I didn’t need to be exposed to.

I enjoyed seeing his family, I love them. They’re my family too. But sometimes I feel like they don’t take me seriously. I know his mom has her own health issues to think of, but that’s the first thing I would have thought of if she were coming to visit and I had been exposed to covid!

So now my husband and I are getting rapid tested on Sunday. I’m trying not to freak out until then. It feels like everything I usually experience is a symptom.

It’s going to be a long wait.