The Importance of Community when You Have RA
Something I wanted to talk about in this article is the importance of community when you have a chronic condition like RA. I want to take this article as an opportunity to share some thoughts and experiences I’ve had lately that really emphasize how important community can be when you’re dealing with all the negative effects of RA: the isolation, the flares, the lack of sleep, and even those random and pesky placeholder phrases — “Everything happens for a reason” and “You should try ____ to help you with RA!”
Little time and energy to engage with the RA community
I am a contributor and moderator on RheumatoidArthritis.net and have been since March 2019. While I’ve been able to continue writing for the site, I haven’t been able to moderate at all. Caught up in the busyness of my day job, the stress of applying to graduate school and other fellowships, and with having RA, I just couldn’t find the time to moderate. Every day after work, I would have no energy to really do anything except for lay in bed and rest.
I felt like something was missing
Coinciding with this lack of moderation, I’ve felt like something was missing for the past few months: I found myself feeling increasingly misunderstood and overwhelmingly frustrated. It just felt like I was alone. That there was no one there to support me or help me.
Feeling understood and supported by this RA community
Then, one night, I got an email saying that someone had left a comment on one of my articles. I decided to log back into our moderation site, have a look at what people were saying about the articles, and respond to the comments on a few of my articles. To my surprise, there were over 173 notifications in my inbox! I had no idea that that many people had read my material and commented on it. I started to winnow through this massive stack of comments and, after about an hour, I had barely made a dent.
The feelings that this experience left me with were ones of feeling important, validated, supported, and, above all else, heard and understood. I realized I had missed this connection so much and recognized that this was something that I really needed in my life, for it feels so wonderful to connect with other people about your experiences with RA, even if it’s in a virtual setting.
Community makes me feel less isolated with RA
Coming back to moderating was a stark reminder to me of the importance of, not only, this community but having a community in general that you know always supports and helps you. Reading through the comments on my articles, I found myself saying, “Yes! You get exactly how I feel!” And not having access to those comments before only exacerbated the feelings of loneliness and isolation that comes with having RA.
I write this article not solely to talk about my own experiences. I want this to be a reminder to everyone that when you’re feeling lonely or upset — or even feeling like something is just off or is missing — reach back out to the people who support you, that you know will always be there for you. It will help you feel not so alone, particularly in such a turbulent time as ours right now.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?