What Does It Feel Like?
“What does it feel like?,” my friend asked (asking generally what the pain of RA – the experience of RA felt like). I was floored...and, for the first time in probably ever, at a loss for words.
How do I explain rheumatoid arthritis?
I’ve spent the better part of eight years trying to put into words my experience with RA. It’s not only hard to explain the disease, but the symptoms are unlike anything I’ve ever felt, as they are to most people.
Yes, I’m in pain. Yes, I experience limited motion. Yes, the side effects of medications affect me more than the actual disease. But, how do I say all this in a way someone with no knowledge of the above can understand it.
My experience with RA pain
I say it feels like I’m wading across a neck-deep mud puddle but, that covers everyday movement. That doesn’t even scrape the top of the pain barrel. I asked my friend to describe her worst physical pain. It was very similar to a pulled muscle. I said, 'Imagine that pain, in your joints, with every movement you make, times 10.'
I don't know how to explain the pain
That’s not exactly true though, is it? Except during flares, I don’t feel my pain too acutely. I feel a throbbing low-grade ache as I suffer through every movement.
I don’t feel like I’ve broken a bone or ripped a tendon apart, but the pain I feel is definitely real and excruciating. But, once again, that doesn’t really illustrate what it feels like to live with this pain. Even now, I am just throwing out words. I don’t know to explain the pain so, let me come back to it.
Explaining side effects is a bit easier
I take a lot of medications with a lot of side effects and, more often than not, I feel them more than the RA itself. Explaining side effects is easy and hopefully, most people have experienced some of them in their own lifetime.
"Why put yourself through that?," they might ask. Because, a few of these side effects means I don’t lose my ability later in life, that I have as much of an able-bodied experience for as long as I can.
So, what does RA feel like?
But still, the question remains: what does it feel like? And honestly, I can’t really describe it. The pain, the disability, the ache, the mental strain, the insomnia, the tossing and turning every night, the constant awareness of every single action. I often use the spoon theory to describe rheumatoid arthritis.
Awareness of every action and movement
However, once again, that only depicts the energy levels. I ask, 'What does your typical morning look like?' "The usual," they say. "Wake up, brush teeth, eat breakfast, and go to work." Okay, let’s break it down. How do you get out of bed? How quickly? How do you swing your legs over?
I go over every movement from the second they open their eyes. My friends realize that I am aware of every action, every twitch. They are blissfully unaware of their physical privilege. And why shouldn’t they be? How do you explain your RA to friends who ask?
I love the empathy. My friend wanted to feel what I feel, understand what I go through every second of every day. But I just couldn’t tell her. I shrugged and looked down at my hands and said...
'You can’t know until you know.'
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?