Rethinking Arthritis Fatigue

My sister Danica* has a next-level guest room. If she ever decided to quit working in [redacted] Danica would conquer the hospitality business. An alchemist, she makes every room in her home walk that delicate balance between beautiful, approachable, and super relaxing.

How does she do it? What makes her guest room such a wonderful place to be?

The bed is comfortable, the linens are luxurious, there’s plenty of room to easily store my things, a small clock radio that’s easy for me to use, and there’s always a little something special waiting for me in the closet. No, you can’t have her address! And you won’t ever pry my extra hoodies, pajamas, and tank tops out of that closet.

Our culture isn’t designed to help disabled and chronically ill people find their way. Those of us who stay sick pose an especially difficult challenge to all the conventional wisdom around health, hard work, and living the good life. Over the years I’ve been through most versions of denial, “overcoming,” and powering through. Hoping that fatigue won’t come to visit didn’t keep it away. Pretending that it can be conquered through stimulants, toxic positivity, or grit and determination hasn’t worked.

What should we do?

I propose inviting fatigue into our lives and giving it a comfortable place to sit. That way, we can start working out an uneasy peace. This doesn’t mean giving up on managing arthritis or seeking out the best treatments but does mean confronting the truth.

Truth: You can do everything right and fatigue might still crash through your front door like Kool-Aid Man.

Truth: You better have something figured out to cope when that happens.

Truth: You are more than anything your body can or cannot do, but you are still living in that body while it does it. Your life is along for the ride.

What’s in my fatigue guest room?

Things to look forward to; keeping my mind on good things like gardening and raising butterflies helps keep me from sliding too far down into the fatigue pit. My phone is packed with pictures and videos of all my butterflies, even Cabbage Empress, the naughty little scoundrel who stowed away under the netting, on my collard greens in 2020!

Protecting my mood and peace, which means swapping the news and social media for movies, letting folks know not to tag me on shootings, racist incidents, or other traumatic imagery.

Crochet and crafting are important to me. Mysteriously, videos about hand-spinning yarn started popping up in my feeds in 2021. I’m learning about safe and accessible ways to do this. Stay tuned!

Banking some of my energy for later use in the form of frozen leftovers, careful restocking of household supplies, and completing household chores ahead of time when possible make a cushion for fatigue to sit on.

What's in your fatigue guest room?

*Danica doesn’t mind being mentioned, but I remain nervous about weird creeps bothering her. So, you only get to know her as Danica. We became sisters by mutual assent many years ago in our college days. Over the past 20 years, she’s stuck with me through everything.