At one point, I refused to write about my chronic illnesses. I decided it was about time I was more open about them. I came to this decision for a few reasons. Firstly, it’s no longer easy to hide my symptoms. Secondly, I’m no longer ashamed of who I really am, and I’m at peace with cutting out of my life those who are bothered by that. And finally, I have personal, safety, and health reasons for staying at home and saying no to visitors at this time. Being chronically ill during a pandemic means making some hard choices and knowing that some people won’t be happy with you. I’m finally at the point where I know I can’t keep everybody happy, and I don’t want to, either. My health and my family’s health comes first.
Being Chronically Ill During a Pandemic: Nothing Changes, and Everything Changes
I’ve explained my illnesses in an earlier post. For this post, suffice it to say that I have asthma, an auto-immune condition, respiratory problems, and a connective tissue disorder that’s robbing me of my mobility, little by little. These are just the major issues. There are other, lesser chronic problems as well. While my asthma is mild, it has become worse over the last couple of years. I also have more triggers for my asthma. All this is to say: I’m high-risk. If I catch this virus, it won’t be pretty. And as I keep saying, I have enough health issues. I do not need something else to add to the list. That’s why this extreme extrovert, anything-but-homebody is perfectly willing to stay home and talk to people via phone, video call, or whatever way I can talk to them without touching them or being near them. And I thrive on hugs, so that’s saying something. I’m fortunate to have my husband and little ones to still give me lots of snuggles. And they also are the reason I’m being overly cautious.
Here’s how nothing changes during a pandemic for those who are chronically ill: we are still chronically ill. Our conditions are chronic, so they don’t go away. We are used to being left out of the conversation (especially as young people with chronic illnesses—and by young I mean “not elderly”), so we’re not surprised when nothing is said about us. We’re not surprised when people are protesting that they don’t want to use masks, because we’re used to not being a consideration. Healthy people’s “freedom” and desire to live always trumps ours. So really, nothing changes. But everything changes.
Being chronically ill during a pandemic means that most of us who rely on therapies to cope with chronic pain no longer have access to those therapies. While my physiotherapy office and massage therapy office have finally reopened, I am still not going to them. And as uncomfortable as what I’m about to say might makes some people feel, it needs to be said. I’m right, and while you’re “sick of the quarantine,” I’m sick in the quarantine. I’m sick always. I don’t get to say “screw the recommendations, I want to go out now.” I can’t afford the risk. And here’s just one example of how I’m right about staying home and saying no to visitors.
Surge in Local Cases Solidifies My Choice to Stay Home
For those who have been living under a rock, here’s how a pandemic works: someone gets infected. They infect other people. Those other people infect other people. And those people infect more people. And it keeps going, exponentially.
Kingston, ON, where I live, had been doing well: in two weeks, we didn’t have any new recorded cases. Then businesses reopened and some people threw caution to the wind, assuming that if businesses were open it was OK to resume life as usual. Except it wasn’t. Two businesses that reopened had workers who got infected. They infected customers. Who then infected people they lived with.
Remember when I said that I wasn’t going back to physiotherapy even though my clinic had reopened? The business where the outbreak happened is a business my physiotherapist frequents. I don’t know if she did go back to that business during the pandemic or not, but it doesn’t matter. Our little city is the perfect example of what happens when you let your guard down during a pandemic. We had no cases for almost two weeks. Then nonessential businesses reopened, didn’t follow proper protocol, and people got sick and infected a bunch of other people.
I know I sound like I’m paranoid. But it’s what I keep saying. If there ever was a time to be paranoid, this is it. And paranoid isn’t even the right word. Overly cautious. We all need to be overly cautious. We all need to understand that just because government says businesses can reopen, does not mean the pandemic is over. Just because we’re doing things to try to get the economy running again, does not mean the pandemic is over. And just because I’m staying home doesn’t mean I can’t support local businesses. As far as I’m able, I’m still doing business with local folks—I’m just getting things delivered, or only going to places where curbside pickup is an option. I wear a mask when I go out (to protect others), I keep my distance always, and I try to limit my outings to once a week for essentials and less than that for non-essentials.
I’m not trying to tell you how to live your life. I’m just saying that as someone who is chronically ill and who can’t afford more disease to add to the long list of illnesses I already have, I’m going to be staying home, and I’m not going to be allowing people into my home. As awful as this may sound, this is what I have to do.
I spent years of my life hiding my illnesses to keep people around me comfortable. I’m done with that. I’m a chronically ill person. My illnesses will never get better, will never go away, and some of them will get worse as I get older. This is who I am, and I have finally accepted it. It also means I’m learning to say no, especially when it comes to protecting myself and my family. People may think I’m being paranoid. I’m OK with that.