My Life with RA: Interview with Wren
The Editorial Team at RheumatoidArthritis.net had the opportunity to interview Wren, a contributor for our online community since 2015. In this brief interview, Wren opens up about her frustrations with rheumatoid arthritis (RA), how social media has helped her cope with the condition, and why she prefers the term rheumatoid disease (RD).
An interview with Wren
RheumatoidArthritis.net: Many of your articles have touched on the real, everyday struggles of living with RA. Was there a particular aspect of RA that you struggled to adapt to and how did you overcome that?
Wren: Of all of RA’s symptoms, the worst for me has always been pain. Its intensity, type, and where it occurs in my body changes constantly, making it harder to cope with, both physically and emotionally. Even after decades, it still surprises and baffles me, frustrates me and, sometimes, it’s simply terrifying. Pain disables. It affects every aspect of my life. Overcoming it is an ongoing, daily challenge.
RheumatoidArthritis.net: You’ve often used the term "rheumatoid disease" in your articles and the community often voices the need for a name change from rheumatoid arthritis to rheumatoid disease. Why do you think the push for the name change is so important to the community?
W: The word “arthritis” means “joint inflammation.” It can be infectious, constitutional, or metabolic, and there are roughly 200 different types. (The most common is osteoarthritis, the one that causes joint “wear and tear” due to aging.)
Rheumatoid “arthritis” is a more serious — and even deadly — autoimmune condition in which the body’s immune system attacks and damages/destroys the synovial linings of the joints. And it’s systemic: it affects many other organs, too, such as the heart, lungs, and kidneys. It triggers harmful inflammation throughout the body.
While osteoarthritis is a true arthritis causing only joint inflammation, RA counts arthritis as just one of several symptoms. They include low-grade fevers, fatigue, brain fog, and a flu-like feeling.
That’s why I prefer the name “rheumatoid disease” or RD. It depicts the real nature of the condition. Taking the word “arthritis” out of the name clarifies the nature of the disease and removes confusion.
RheumatoidArthritis.net: How has your online presence and use of social media helped in managing the unknowns that come with RA?
W: Becoming part of the online RD community was a world-changer for me. One of the serious issues many of us face is social/emotional isolation. Pain, discomfort, and fatigue are all hard to describe to others. But meeting and talking to people — even virtually — who “get it” is a great comfort. Sharing coping techniques and ideas, offering each other emotional support, and telling our stories is simply vital to living well.
RheumatoidArthritis.net: Many community members find it challenging to manage the ups and downs of RA. How have you managed to cope or stay positive during challenging times?
W: I’m a die-hard optimist. But sometimes staying positive with RD is tough and, like everyone else, I get blue. Over 30-plus years, though, I’ve learned to accept these down-times. They’re natural and, I think, necessary. How can I appreciate the good things without experiencing the bad?
I’m extremely grateful for the times I feel better. I make a determined effort to notice the small but soul-healing gifts life offers to all of us: loving friends and family, sunshine and storms, birds, flowers, pets... the list is endless. Watching for these gifts has sustained me through more than 30 years of living with RD.
RheumatoidArthritis.net: Is there anything else you’d the community to know?
W: I want them to know how much I appreciate them. Thank you, everyone, for your support, kind words, and encouragement. And stay hopeful! Medical research and science continue to develop near-miraculous drugs that treat and slow the progress of this serious disease, helping many of us live more normal, productive lives. One day, I believe they’ll find a cure.
Read more about Wren’s RA journey throughout the years.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?