How I Lost My Patience With Rheumatoid Arthritis


Patience. I used to have it.

As a young mom, I could read the same book over and over and over again to my young boys. I had no problem tolerating a television volume that was a little too loud. Or waiting in a long grocery store line. I was even comfortable waiting 20 minutes until the Tylenol kicked in when I had a headache.

I was OK with all of it. I wore patience like a badge of honor that said: I am a mom and I am patient.

During my 20s, 30s, and 40s I was also a gardener, photographer, dog walker, hiker, kayaker, explorer, biker, weight lifter, and antique hunter. (These are all activities that require hands and feet to work properly.) But after being diagnosed with rheumatoid arthritis in my early 50s, I started to lose the ability to do the things I enjoyed.

Along with my ability to walk a straight line, I also lost my patience.

My ability to let things unfold, slowly, began to unravel.

I wanted new medications to work immediately.

I wanted my blood tests to be delivered promptly.

I wanted to heal.

I simply did not have the luxury of time.

According to my rheumatologist, I have seropositive erosive arthritis. I remember the exact words of the first rheumatologist I spoke to after being newly diagnosed. He said, “You have RA. You will have RA for the rest of your life. It may shorten your life. You’ll be on chemotherapy forever.”

I think they make rheumatologists memorize this speech because my second rheumy spoke to me the exact same words. And I remembered them all precisely. Those words change a person.

What kind of wine do you serve with that news?

I came home, crumpled into a fetal position on my bed, and wept. I wept until it was difficult to breathe. I wept as waves of grief overcame me. I grieved the life of normalcy that I had planned with my husband, the ability to dress myself, to walk without limping, to be pain-free, and a million other losses and fears. I never thought about ending my life, but I couldn’t see a way forward.

My healthy body had vanished. I felt full of hopelessness.

I started reading everything I could about inflammation. As I began to learn more, I worried about the inflammation sitting in my joints. After a bone scan was done on my right wrist, my rheumatologist spotted some permanent bone erosion. I began to feel as if I were in a race against time.

Waiting for the insurance company to consent to a new drug? That takes several weeks. In that time, a little more bone erosion occurs in your right wrist.

Waiting three months for the new drug to take effect? There goes the left wrist. I lost the ability to wait patiently… tick tock, tick tock. We’re talking about bones here!

With the massive loss of control and with new fears emerging about permanent damage, I needed to do something. Since I could not control my physical self, I decided to take a giant nose-dive into my internal self — my consciousness.

And at this time — as if by divine intervention — a friend suggested a book called “The Untethered Soul” by Michael Singer. It was like a lifeline to me — a path forward for my hamster-on-a-wheel emotionally-spent mind. With Michael’s teachings, I learned the mind can be a wonderful tool for making decisions, but it can also spin uncontrollably and cause tremendous pain, especially when we don’t like the way things are.

I found solace in the wisdom that we can alleviate emotional pain, even when we cannot change the physical.

After living with RA for four years and practicing mindfulness, I’m not yet back to my pre-RA patience quota, but I’m OK with that. I’m trying to learn to be at peace with my life’s circumstances  — including my errant bursts of impatience.

Lori Soucie Be patient photo

Photo via lorisoucie.com

Similar to a physical illness, the emotional challenges are ones that require practice…. and as much patience as I can muster.

We want to hear your story. Become a Mighty contributor here.

Getty Images header photo via KalDunn


Find this story helpful? Share it with someone you care about.