Living with Rheumatoid Arthritis: The Invisible Battle I Never Expected
In October 2018, I visited a rheumatologist for the first time after enduring several months of intense arthritic pain, especially in my feet. The pain had become so severe that even walking felt impossible. I was diagnosed with Spondylarthritis, but truthfully, I don’t think the doctor really knew what was going on. The symptoms hit me like a freight train, sudden, overwhelming, and terrifying.
With a family history of Crohn’s disease and arthritis on both sides, I had a feeling something more was happening. By the end of November, the pain spread to both of my hands. Blood work revealed elevated erythrocyte sedimentation rate (EST) and C-reactive protein (CRP), terms that meant nothing to me at the time but soon would become familiar markers of my new normal.
Then in January 2019, I received the official diagnosis:
Rheumatoid Arthritis (RA) involving multiple joints with a positive rheumatoid factor.
I didn’t know what that meant.
I didn’t know what was coming.
I didn’t know how deeply it would change me.
Even though a close friend had three family members with RA, including two daughters diagnosed as teenagers, I now realize how little I truly understood. I’d heard about “bad days” and flare-ups, but didn’t grasp the full, relentless weight of the disease. Looking back, I regret that I didn’t offer more empathy, because I simply didn’t get it.
RA is no small thing.
It’s chronic. It’s painful. It’s exhausting. It’s unpredictable.
It’s a disease where your own immune system turns against you, relentlessly attacking your joints, day after day.
Some days, it feels like my body is under siege.
Over the years, I’ve endured three surgeries directly due to RA: carpal tunnel surgery in both hands and eventually a total knee replacement due to irreversible joint damage. These weren’t isolated injuries. They were the result of a disease that never lets up.
I’ve seen two different rheumatologists and I’ve tried four different medications, and I’m still searching for something that truly helps. I’ve yet to experience remission. My RA has been persistent.
I adored my first rheumatologist. A no-nonsense New Yorker with a warm heart, she made me feel like I was her only patient. When she began nearing retirement, I transitioned to a new doctor who I’ve now seen for over a year. We’re still navigating treatment options, a common reality with RA. Even though there are many medications, finding the right one can be a long and winding road.
My first doctor used to say, “You’re wired differently.”
And she was right.
RA doesn’t look the same for everyone.
What brings relief to one person may do absolutely nothing for another. And these aren’t quick fixes. Most RA medications take weeks or even months to fully work. Some require self-injections. Others, lengthy infusions. Each trial is a waiting game filled with hope, anxiety, and sometimes disappointment.
But here’s what I’ve learned, the part I carry with me:
RA teaches you how to live in the unknown.
It strips away the illusion of control and demands patience (lots of patience), grace (my favorite, most powerful force), and adaptability.
And it’s also taught me this hard truth:
I shouldn’t take matters into my own hands.
There was a time I stopped taking a prescribed medication because I thought it wasn’t working. I didn’t consult my doctor (HUGE MISTAKE), I just quit. I was frustrated and tired of waiting. But that decision only made things worse for me. My symptoms intensified to the point where I could barely function. I ended up literally begging for an appointment. Thankfully, my doctor helped me understand that with RA, some answers take time. It’s not always about the quick fix, but about trusting the process even when it is slow, unclear, and downright maddening.
And here’s something else I’ve come to understand, something harder to admit.
I owe an apology to my friend.
I’m sorry I didn’t fully grasp what you were going through with your loved ones. I now realize I likely offered surface support when you probably needed deeper compassion. I didn’t mean to minimize your struggle. I just didn’t know. But now I do.
This much I know: We don’t always need to understand someone’s pain in order to sit beside them in it. But when life hands us that understanding, through experience, through illness, through loss, we can use it to become more compassionate, more present, and more human.
So, I’ll keep learning out loud. If sharing this offers clarity to someone navigating their own diagnosis, or helps a caregiver better understand what their loved one is facing, then I’m glad I shared.
Comments
Post a Comment