July 2020

About a month ago RA Healthline launched on iTunes and on google play. RA Healthline is an app made specifically for people like me. People with Rheumatoid Arthritis. Interestingly it’s also for people who live with people who have Rheumatic Diseases but I’ve not seen that community show up en masse yet.

So a month into logging into the app at least a few times a week has left me with some interesting thoughts about RA Healthline and online communities in general.

I don’t enjoy thinking about RA every day.

There are people with chronic diseases in their social media bios. There are people with fantastic websites devoted to their diseases. These people have helped me a lot. This is not who I am. I am not resolved/accepting/okay with the disease. I have it, I hate that I have it, and the last thing I want to do is think about RA.

The best way to live well with RA is to think about RA every day.

Isn’t that something? All diseases are a bit cruel, but these chronic ones really have a way to getting into your life in some crazy ways.

I never would have started an RA app, and I’m exactly the person who needs one. Isn’t that odd? I’ve been working with RA Healthline since the beginning of June, popping into the app, greeting new people, participating in daily chats (5pm pacific!), and learning. I’ve learned a lot.

Many times I opened the app with a feeling of dread because I just didn’t want to deal with the fact that I have RA. A few minutes in and I’d be comforted, which is not what I expected but a wholly delightful outcome.

You see RA is a tricky diagnosis. Not everyone is diagnosed the same manner, and symptoms can be all over the place. When I try to talk to my friends about it they tell me about their aching joints, and I cannot stress enough how this is not about my joints. For some people it is, for me it’s fatigue. I’ve been able to connect with people via social media but I’d rather not have some things on a public timeline.

Because RA Healthline is a standalone app I’m able to get the information I need without the discomfort a public forum provides.

Again, I hate that I have RA (I’ll probably say that 923439 more times today). I know that no one wants to hear that. I’m supposed to get online and be like, “Look at me! I’m a success story! I play tennis, and practice yoga, and play golf, and plant my own garden.” But what I really want to say is more like, “Look at me! I play tennis because I can’t run more than 5 miles at a time. My body may look fine to you, but I can’t get a runner’s high. I’m practicing yoga because I can’t get that runner’s high, and if I don’t get some time to meditate each day I’m a twisted up pile of rage!”

I get it, I know that this makes me the worst ambassador on earth because when you’re newly diagnosed you’re looking for someone who can be hopeful with you. I’m also that person. But not on the same day that I’m the cranky person, and if it is on the same day that means I started out happy then ended up not-so-happy because it seldom goes the other direction.

No one on RA Healthline thinks I’m kooky. All of these bonkers up and down feelings about Rheumatoid Arthritis are shared by the men and women I’ve interacted with there.

I like RA Healthline because it’s agnostic, I feel comfortable matching with people via PM, and I’m also confident that people are being greeted as they enter the app. Covid-19 has made life lonely for everyone, particularly for people with compromised immune systems so being greeted is really wonderful. Mostly though, there’s a group for everyone, and those groups matter.

I’m not a fan of alternative therapies, and that’s never been a secret. But there’s a group for people who are. I’m finding the lifestyle group to be the sweet spot for me, with lots of chatter about how we’ve all adapted to our new normal, and periodically Escape From RA is the group for me, with just silly stuff. You see, the news is too dense and fast to use social media for anything else right now. How would you talk to someone about how ibuprofen and acetaminophen combined relieve pain as well as Tramadol? I’m going put that on Twitter? Probably not.

Additionally, RA Healthline has chats every evening at 5 o’clock. These remind me of hashtagged Twitter chats before they were taken over by sponsorships and discount stores. It’s a comforting visit with robust discussion, that is sure to get evolve as new users join in.

The app is a breeze. I’ll be hosting some of the 5 o’clock chats on there. Please be sure to join me. And if you have Rheumatoid Arthritis or live with someone who does, what are you looking for in an online community? I want to hear from you.