What Does Rheumatoid Arthritis Feel Like?
When I was first asked to write about what it feels like to live with rheumatoid arthritis (RA), I thought it would be pretty easy. After all, I’ve been living with RA for the last eight years — that should give me enough experience to explain what it’s like.
But as I really started thinking about it, I realized it was more of a challenge than I expected. RA is something that impacts every day of my life — and yet it does not define me.
I spend a huge portion of my time thinking about my body and focusing on my health — and yet I often feel I can’t trust my own body and I rarely consider myself healthy. How do you explain what that feels like to someone who hasn’t personally experienced it?
One useful tool for explaining life with a chronic illness is Christine Miserandino’s Spoon Theory. Though written as a metaphor for life with lupus, the spoon theory provides a tangible way to describe how chronic illness forces you to allocate very limited energy to complete ordinary tasks.
The spoon theory is also a good way of illustrating the enormous level of uncertainty that chronic illness can bring into your life.
But when it comes to RA specifically, the spoon theory falls short of explaining the impact of pain, both physically and emotionally. So, with my thought process temporarily stymied, I turned to my RA community on social media.
Sufferers Describe What RA Feels Like
I was curious to see how others living with RA would explain how it feels — particularly the impact of pain. The responses I received were both familiar and distinctive, so I wanted to share a few of them:
“I always describe RA as having the flu the day after a car accident.” – Molly, age 36, living with arthritis for four years.
“I feel like a moody hormonal teenager most days. Some days I am able to move freely, no medicine, no one stopping me. Other days I can’t open my hands, wear shoes, or even comfortably wear pants on my RA stricken hips.
My body feels like it’s shutting down completely and no matter how much medication I take the only way I find relief is to remember in the back of my head that I’m going to be ok.” – Karlie, age 25, living with arthritis for two years.
“I feel like most of the day I could lay down anywhere and take a nap, even after sleeping a full night. When joints hurt the best way I can describe it is that it feels like a hammer hit me. It makes the joint so tender that even the thought of a bed sheet touching it makes you wince” – Brandi, age 33, living with arthritis for 20 years
“Some days it feels like I was brutally beaten up with a golf club, while other days it is more of a tight, throbbing ache — as if a vice grip is increasingly tightened around my joints or what I imagine it would feel like if a body could rust.
Imagine you’ve been forced into a box that is too small for your body, and you can’t stretch or extend your joints. Each day can be a surprise as to which joints are affected; it is completely unpredictable. Will I be able to walk tomorrow or open my mouth to eat? Will I be able to lift my elbow to shampoo my hair or use my fingers to snap my infant’s onesie?” – Jeanmarie, age 31, living with arthritis for six years
“It’s a stabbing, sharp pain that stops you in your tracks. Or it’s a dull but constant ache that stiffens your joints. It’s telling your friends and family that you have to change plans at the last minute because your joints are suddenly swollen and inflamed. Or telling your kids you can’t play today because you feel like you’ve been hit by a bus.” – Christina, age 38, living with arthritis for 35 years
Pain Is a Part of Life
It’s clear from these descriptions that the pain experienced by people living with RA varies quite a lot — how often you are in pain, which joints are affected, how much it hurts, what it feels like, and the way it impacts you emotionally. But one thing that all these descriptions have in common is that pain is an integral part of life with RA.
It cannot be ignored. And, realizing this, I was able to think up my own metaphor for life with RA.
RA Is the Pebble in Your Shoe
Living with RA feels like always having a pebble in your shoe. At first, you may not think that sounds like a very big deal — it’s just a pebble, after all.
But soon you realize having a pebble in your shoe impacts almost everything you do. And sometimes the pebble is under a very tender part of your foot, so even ordinary tasks like walking or standing become excruciating.
Sometimes the pebble even cuts or bruises your foot, leaving you with an injury that hurts for weeks or months while the pebble continues its damage in another location.
Other times, the pebble moves into a roomier part of your shoe and you hardly notice it’s there at all. Or, if you're lucky, you may be able to a pair of shoes that reduces the impact of the pebble.
In those cases, you may be able to do ordinary things without pain. But the uncertainty is always there. You never know which action may cause the pebble to move to another part of your shoe, making everyday life painful again.
And the pebble never ever goes away. For the rest of your life, you have to remember that there’s a pebble in your shoe and make all of your plans accordingly.
Sometimes you really, really hate the pebble and you perseverate on the pain and unfairness of it all. But sometimes you meet someone else living with a pebble in their shoe, and you realize you can support each other in solidarity.
And, eventually, you hope to be able to find strength from living this way — and an intense appreciation for anything you are able to do without the pebble getting in the way.
The above article was originally written by Mariah Leech, who lives with rheumatoid arthritis and share her perspective on what it is like to live with RA.