Lessons From My RA Journey: A Real and Raw Account of My Life With RA (Part 6) | Arthritis.com

Lessons From My RA Journey: A Real and Raw Account of My Life With RA (Part 6)

Get Updates

Want updates on new articles, resources, and more?

Lessons From My RA Journey: A Real and Raw Account of My Life With RA (Part 6)

By Diane Chamberlain

Lessons From My RA Journey: A Real and Raw Account of My Life With RA (Part 6)


I’ve learned so much on my RA journey. Sometimes it seems as though each setback has led to a positive change in me psychologically and spiritually. I’m calmer, less fearful, and far more grateful. Perhaps some of those changes are a function of getting older, but I think it’s more than that. Having a chronic illness puts everything into perspective. It lets us know what’s truly important. Above all, at least for me, it’s helped me separate the physical from the spiritual and taught me that I didn’t need one to have the other.

“Having a chronic illness puts everything into perspective. It lets us know what’s truly important.”

I want to share some suggestions that have worked for me and eased my journey, helping me rise above the pain, frustration, and fear of coping with RA:

Figure out how to continue to do the things you want to do.

I nearly had to give up public speaking a few years ago. As my RA progressed, I began to realize my focus was split as I spoke: one part of my mind was on what I wanted to share with my audience, while the other part was on the fact that all my weight was on my “good,” right foot. I was essentially doing a balancing act that made me anxious. One night as I was about to speak at a bookstore, I noticed a nearby stool. I pulled it behind the podium and sat on it as I spoke. What a difference it made! My focus was on my talk and my audience, my foot forgotten for an hour. Since that time, I’ve requested to sit whenever I accept a speaking engagement. It’s made public speaking one of the most enjoyable parts of my life.

Consider finding a support group.

Support from friends and family is important, but there’s nothing like a group of people who really “get it.” I found an online group of people living with RA in the mid-90s and we are still connected today. We were more active in the early days when many of us were new to RA and in great need of support. We even met in person at events we affectionately termed “gimpfests,” where we’d spend a weekend in a central geographic location. We’d get to know one another better, do a little sightseeing, and enjoy the “Gimp Olympics,” competing in events such as “compression bandage wrapping.” And we’d laugh, obviously. How wonderful it was to spend time with friends who understood us so well.

Ditch the vanity!

This has been a tough one for me and I suppose it would be for anyone. I try to look good to the best of my ability, but my need to wear my brace, which is physically attached to a clunky sneaker, outweighs my need to wear cute shoes. The brace not only helps me walk, but prevents falls as well. I may be the only woman at a formal event in a long gown and sneakers, but at least I’m there.

I know you’re tired of hearing this one, but find a type of exercise you can enjoy.

When I was first diagnosed with RA, my doctor told me the best exercise for me would be Pilates, but I was too deep in battling RA to even think about working out. I toyed with yoga for a while, but found it made me angry instead of peaceful, since there were so many poses I was unable to do. Then my gym started offering a Pilates class and I gave it a try. I knew instantly I’d finally found my exercise calling. Pilates strengthens your core. It’s an incredible experience to feel the muscles of your belly growing tighter and stronger by the week. I’m grateful to my doctor for that long-ago recommendation and working with me to find an exercise regimen that was achievable.

Discover what brings you joy and embrace it.

Maybe it’s cooking or singing or reading a great book. I only recently discovered the pleasure of feeding the birds in my yard. I could spend hours watching them. These joy-giving activities may not be the same as before you had RA, but for me at least, they have even more value because I appreciate them in a deeper way.

Discover your own mantra.

In an earlier post, I mentioned the mantra that came to me unbidden one night. It was a line from the song “Signs”: Thank you Lord for thinking about me; I’m alive and doing fine. It’s hard to overstate the importance the role this mantra has for me. It’s my main centering tool when I feel anxious about mounting health issues. At night, my mind often drifts to worrisome thoughts: What is that new pain? What will that new test be like? I try to replace those thoughts with my mantra. I was fortunate that my mantra popped into my head unbidden, but I bet you have one too and perhaps don’t even know it. Is there a phrase that brings you a sense of peace and calm? A gut-level belief you can sum up in a few words? I hope you’ll embrace those words and make them yours.

As I’ve shared my journey with you, I realize it is exactly that: my journey. Yours is different, but the thing we all have in common is that we’re stronger than we give ourselves credit for. We’re experts at dealing with the tough stuff, right? I hope you’ll join me in embracing who we are as we plow ahead, learning to take care of ourselves while we relish the many things that still bring us joy.

Take the next step in learning
about the management of your