On Control: How living with lupus is helping me face the pandemic
Control the spread of COVID-19. That’s what we’re hearing right now. Your individual actions can save us here. It’s in your control. Limit your exposure, be vigilant in your cleaning regimens, find 23-second-choruses to which to wash your hands, homeschool your kids while working from home full time. Do it all. You’ve got this. Meanwhile, keep command of your focus; don’t get too distracted by the pandemic raging outside your doors. Smile. Keep your family calm.
I’m not disputing that some of these are good directives.
I’m just saying that it’s fucking hard to feel personally responsible for something as huge as life and death.
A few years back, I was diagnosed with lupus. My body was slowly killing itself and I was told both that it was my fault that this happened and that I could control it going forward. It was my fault because I had succumbed to high levels of stress and anxiety and had gleefully exposed myself to high levels of sun that summer. But, supposedly, I could fix it going forward if they were successful in rebooting my immune system.
It was simple, they said. Overnight, change your life. Fill and keep track of all these costly prescriptions, don’t stress, sleep 8–12 hours a night, don’t eat certain foods, protect your body at all costs. Wash hands constantly. Avoid germs. Monitor. Log. Be social but avoid sunshine. Find a way to work from home but don’t overwork.
I was actually pretty good at it. I’m a woman; learning to control stuff is conditioned from a very young age. Control your temper. Control your food intake. Control your children. Control your attitude. Control your smile. Control your reaction. Control your waistline. Heck, we’ve even got control-top pantyhose.
About a year ago, though, I kept having panic attacks when things would happen that were out of my control. A storm will delay this flight, putting me in a germy airport for longer? Panic. How long will this social event go? Will I get enough sleep tonight and be “lupusy” tomorrow? Panic. Will my joint pain prevent me from going on the run I wanted to go on today? Panic.
So, I finally started going to therapy. My ask of my therapist was simple: “Can you give me some tools to help control my anxiety response to uncertainty?”
In hindsight, I can see why that was the wrong tactic.
I didn’t need to learn to control more. I needed to learn to find peace in the midst of uncertainty. I needed to try my best but also acknowledge that some things are unknowable. I can only prep so hard. At some point, I’m doing more damage to myself.
I’m still struggling with this. I’ll go for month stretches where I’m in high-anxiety mode, especially when it comes to work. If I can work hard enough, I can control the outcome here. That said, I keep trying to remember how damaging the rhetoric of personal responsibility and control is to my overall mental and physical health. I’m not saying we don’t have responsibility. I’m just saying it’s okay to give yourself grace.
I bring this up now because, in the midst of the spread of COVID-19, I have found myself in an eerie space of calmness. For the first couple weeks, this wasn’t the case. But, as shelter-in-place orders sweep the nation, a new calm has washed over me. We bought our groceries. We wash our hands. Our books and puzzle supplies are ample. Our doggy is snuggled in with us. For now, we can still go outside. What else can I do?
I speak from a position of privilege because, unlike so many others, I was already working from home. I also don’t have kids. Thanks to my weakened immune system, my life had already been set up in a manner that prioritizes social distancing. So the amount that this disrupts my life is a lot less than others around me. And for that, I feel an immense amount of gratitude.
That said, I so recently went through the same shock people are currently experiencing as I was forced inside, forced to fixate on germs, and forced to accept the uncertainty that surrounds life and death.
I’m not saying it will all be rosy. It won’t. It really fucking sucks, especially when financial insecurity is thrown in the mix.
But I am saying that this is not all on you. At some point, you can do more damage than good by trying to obsessively control the situation. I am saying that there is a peace in accepting what you can not control, in staying in with the ones you love, in connecting virtually with those from afar, in experiencing new worlds via literature and film, and in learning to let go.
Over the next little while, for as long as the mood strikes me, I plan to write a little more about my process of adjusting to my diagnosis in hopes of helping myself and others find meaning here. So, stay tuned if you’re so inclined.
