Mental Gymnastics: Living with Long COVID and Invisible Illness
I am approaching the two-year anniversary of contracting COVID—something that has profoundly changed my life. What began as an infection has led to Long COVID and other chronic illnesses that affect me every single day.
Today, I’m writing this while sitting under a beautiful tree, about an 18-minute walk from my house. It’s not far—just under a mile—but it feels significant. The tree’s leaves are starting to change, and as I rest here, I can’t help but think about how, for months (maybe even a full year), getting to this park wasn’t possible.
Last December, I began losing the ability to walk on my own and had to start using a cane for support. Since then, there have been moments of joy when I’ve managed to walk farther than this park, small milestones that meant the world to me. But there are also reminders of my limitations: when I fly now, I usually need a wheelchair because the sheer energy of travel drains me completely.
Today, though, my body feels good. I even have the urge to keep walking, but invisible calculations and quiet negotiations run through my head:
This afternoon I’m seeing my niece for about an hour and a half, which will involve moving around and playing—energy I’ll need to save.
After that, I’m playing a board game with new friends. Even though I’m excited, socializing and engaging take a lot of mental and emotional energy. (The fact that I have two social outings in one day is actually a huge milestone for me!)
If I keep walking, I risk being exhausted later and pushing myself through the evening, which could lead to a crash and flare-up tomorrow.
At the same time, I know that rebuilding strength in my legs is important—I’ve lost most of my muscle mass over the past two years.
It’s hot and sunny, which may be draining me more than I even realize. Once upon a time, I loved basking in the sun. This summer, though, I could barely go outside without the heat wiping me out.
I also have a trip coming up next week that I’ve been looking forward to for six months. I know it’s going to be a huge energy expenditure, so I’m trying to preserve what I can in the days leading up to it. My “battery” is maybe 25% of what a healthy person’s would be—and it drains quickly.
When I put all of this together, my conclusion is simple: it’s best to turn around and head home, to rest before the day ahead.
I share this because so much of chronic illness is invisible. My daily life is an ongoing puzzle of managing energy, deciding whether I can handle laundry or whether that energy needs to be saved for something more meaningful, like time with loved ones.
Right now, I’m in a strange and challenging place. I’ve started a new treatment that has improved my quality of life significantly—I’ve “leveled up” my energy compared to before. Friends and family are seeing me out more, and on the surface, I look like I’m doing fine. But what they don’t see is that I often spend the entire day on the couch just to make it to an outing. That I sit to brush my teeth or do my makeup to conserve energy. That every decision comes with layers of mental gymnastics.
Unless someone has experienced disability or chronic illness themselves, it’s nearly impossible to explain what this invisible balancing act feels like. But I want to try. I want to be seen.
So if you know someone who is chronically ill or disabled and you see them out, remember: their presence doesn’t necessarily mean they’re healed or symptom-free. Chances are, a lot of planning, resting, and sacrifice went into that moment. Today might be a “good” day for them—but tomorrow may be different.
As for me, I live my life day by day. I’m grateful for this particular day, for the walk to the park, for the energy I have right now. I’m also grateful that, overall, my energy seems to be trending upward. But I’ve also had enough crashes to know that progress isn’t always linear. Tomorrow could be hard.
So I hold on to today. Thus, day by day.