What I’ve Learned From the RA Community

The rheumatoid arthritis (RA) community is diverse. It is full of people from all ages, genders, and geographic locations. The RA community is also full of support. People looking for information or validation ask countless questions, and the community is always there, ready to help.

We asked a few of our RheumatoidArthritis.net Health Leaders what they have learned from the online RA community. Here’s what they said.

Every story is worth sharing

“The most valuable and poignant lesson I’ve learned from the RA community is that every story and every experience is worth sharing. I’ve written several articles that I worried wouldn’t resonate with the community, and those are some of the articles that have spurred the most conversation in the comments. And those comments and conversations in the comments and in discussion threads, they’ve taught me so much too.

From tips and tricks to empathizing with other people who’ve walked the walk and talked the talk, I’ve found a real sense of camaraderie with and from the RA community. I’ve learned that every person’s experience may be different, but ultimately the way we can all relate to and support each other is incredibly powerful.”
– Amanda Osowski, RheumatoidArthritis.net Health Leader

I’ve learned tips to better manage my pain

“Although I am a relatively new(ish) member of the RA community – only being diagnosed in the last couple of years – I have learned so much in terms of the different methods of managing pain.

Everyone's regimen is different, whether that's pharmaceutical medications like DMARDS or non-pharm management like massage, exercise, a special diet, etc. It's been really eye-opening to me to see how many different ways you can attempt to manage pain and gain a better quality of life. It's helped me remain hopeful that one day I will find the right balance for myself because I have a front-row seat to seeing people do just that.”
– Janeil Whitworth, RheumatoidArthritis.net Health Leader

I can truly be myself in this community

“I have learned so many things from this community. However, what has been the most valuable to me is that it is okay to be my authentic self. This community has given me a safe space, and that safe space has allowed me to be vulnerable. Because of that, I’ve had the opportunity to connect and interact with so many different community members.

In this amazing community, I am not a woman diagnosed with rheumatoid arthritis. Instead, I am an individual with a life story, who happens to have rheumatoid arthritis.”
– Lynn Marie Witt, RheumatoidArthritis.net Health Leader

I’m not alone

“The RA community has been instrumental in learning about RA, myself, and how others process having such a debilitating disease like RA. Everyone's experience with RA is different. For instance, I was diagnosed when I was 22 and am a man, so I am not the stereotypical demographic for someone diagnosed with RA.

This was initially so troubling to me because I felt alone and afraid. No one I knew at the time had a chronic joint disease, understood the pain I was feeling, or understood why I would wear wrist and ankle braces. Yet when I joined the RheumatoidArthritis.net community, I found so many of my feelings, qualms, and stories represented. There were, in fact, other young people diagnosed during what was supposed to be the prime of their life."
– David Advent, RheumatoidArthritis.net Health Leader

I became a more empathetic rheumatologist

"Joining the RheumatoidArthritis.net team has broadened my horizons in so many ways!! My eyes have been opened to all the things my patients struggle with in their personal lives, and how their arthritis affects every single aspect of their lives, family, and work. With being in medical training and working as a doctor, our perspective can become closed off and one-sided.

I believe those working in health professions can lose sight of what it’s like to be on the other side of things. It can be easy to fall into the trap of focusing on what’s important to me as a doctor in managing rheumatoid arthritis without considering what’s truly important to my patients or how their priorities might be different. Reading others’ articles and experiences reminds me to increase my patience, work on my listening abilities, and make sure I affirm what my patients are going through."
– Dr. Donica Liu Baker, RheumatoidArthritis.net Healthcare Provider

What have you learned from being a part of the rheumatoid arthritis community?