I’m probably not alone in being fascinated with how the “normals” have dealt with COVID-19 isolation (similar in so many ways to life with chronic illness), struggling to find the motivation to get out of PJs and into a proper pair of pants. But when you have rheumatoid arthritis (RA), you’re not just battling existential ennui: You're also fighting fatigue and pain that get in the way of something as basic as getting out of bed. How do you find the motivation to keep going when your get-up-and-go got up and went?
Truth time: It just took me four days to send a quick text to arrange for a repair of my wheelchair. I thought about it several times every day, but the mere thought of spending quite literally 23 seconds to text my tech had me curling up in a metaphorical fetal position. As a person with RA who is immunocompromised, I’m high-risk so I’m staying home.
My quarantine isn’t ending anytime soon, and it’s taking a toll on my mental health. Although it was sort of bearable when we were all in this together, it's been depressing and discouraging to watch the rest of the world burst from their homes as restrictions begin to ease. The virus still isn't gone. Not everyone is wearing masks. And so I still feel as if the only way I can stay safe is to remain in my one-bedroom apartment until there’s a vaccine.
I love my home, but not that much.
The only silver lining in this situation is that I recognize this struggle to find motivation. It’s been part of my life on and off, usually arriving on a tandem bike with a bad RA flare. It’s made up of part intense coping with something very hard, a dose of depression, and a dollop of despair. For weeks (or months) nothing gets done and when I come out of it, there is an inevitable struggle to catch up and clean up. But since I know the feeling and have been here before, I also know how to get out of it.
My go-to plan to dig myself out of this kind of emotional and mental pit involves four basic building blocks that feed on each other and eventually create an almost independent motivation.
Treat yourself like a friend. When the struggle feels heavy day after day, it’s normal to start thinking really mean things about yourself. You’re not alone if there’s a voice inside that’s haranguing you about being lazy, worthless, and a burden to everyone. That’s depression speaking, as well as internalized stigma about not being able to pull yourself up and just do it (to borrow a phrase).
You would never say any of these words to someone you care about, so don’t allow them inside your head, either. Each time your inner mean girl comes out, take a moment and push back with love. If it helps, even say the words out loud: “This is not an acceptable way to treat myself.” It might feel silly at first, but eventually it sticks.
Coping is work. Once you’ve pulled just a bit out of the self-recrimination spiral, recognize that coping is work. Sure, it may look like you’re lying on the couch nursing a bag of medicinal potato chips, but your mind and your body are busy coping with something very difficult. Whether it’s the pandemic or dealing with the physical, mental, and emotional hit of RA, it’s work.
In the early stages of that work, much of it is internal, but that doesn’t mean it isn’t demanding. When you’re busy on all levels, there may not be anything left to do something as seemingly simple as a write a text or wash a dish. Try to do the absolute essentials—paying rent, taking your meds—and leave the rest for later when, you’re feeling more up to it. And don’t worry. That day will come.
Start small. When you start to actually notice the mess or a particular task feels do-or-die, start small. No, smaller than that. Break the task into its component parts, and then break those into even smaller tasks. Give yourself permission to do something so tiny that it seems ridiculous. That’s the perfectly sized bite to get you started.
Limit how much you do next—keep that small, as well. This will reign in the impulse to do it all in one day, which will get you back on the couch coping with a huge RA flare. Every day, do less than you can, so you can do more the next day and the day after.
Find ways to spark joy. You’ve probably heard the phrase, may even have watched Marie Kondo help people organize their homes. A tidy house doesn’t work for everyone, but that thing about sparking joy is important. As you take the first steps on the path of reclaiming your life, focusing as much as possible on what gives you a moment of happiness and contentment will help you keep going.
If you’re having trouble doing the dishes, use the good china—you’re more likely to take care of something you love. Play irresistible music that gets you dancing, even just a little. Call a friend who makes you laugh before you call the plumber (or the wheelchair tech). When you’re done, celebrate with ice cream, a gold star, a good book, or anything else that feels like a reward.
Motivational quotes will have you believe that getting going just happens or that it’s a matter of willpower. It’s not that simple, especially when you are trying to light a fire in your belly, but the rest of your body and mind are busy fighting the RA blaze or coping with a worldwide pandemic.
Cut yourself some slack—some days a lot of slack—and let Confucius be your guide. The 6th century B.C. Chinese philosopher said, “It does not matter how slowly you go, as long as you do not stop.” That’s a motivational quote made just for those of us who live with chronic illness.