Living with rheumatoid arthritis (RA) can be overwhelming and difficult to navigate alone. While family and friends might offer the best support they can, having people to lean on who know exactly what you’re going through is invaluable.
RA Healthline is a free app created for people diagnosed with RA. The app matches you with others based on diagnosis, treatment, and personal interests so you can connect, share, and learn from one another.
Lisa Emrich, who blogs at Brass and Ivory: Life with MS and RA, says the app brings her great comfort.
In 2007, she was diagnosed with RA after being misdiagnosed with severe carpal tunnel syndrome in both wrists.
“I had been referred to a hand surgeon who gave me steroid injections in the wrists. That doctor told me that he thought I had RA instead which finally led to my diagnosis,” Emrich says.
The pain in her hands and wrists eventually forced her stop playing piano, which took an emotional toll on her since she’s a professional musician. While she manages RA with medication and diet, having others to talk to about the overall effects of RA helps her cope.
“It’s great to be able to communicate with people who truly understand RA,” says Emrich. “Whether you are seeking advice or want to offer advice or just a kind word, connecting with people who ‘get it’ is valuable in the fight against this progressive and debilitating chronic disease.”
Each weekday, the RA Healthline app hosts group discussions moderated by a guide or advocate living with RA.
- pain management
- alternative therapies
- mental health
- so much more
Jessica Gottlieb, who blogs about living with RA at Life with RA, says the groups offer the opportunity to choose topics depending on what you’re interested in that day.
“Having a disease like RA just wears on you emotionally. If I’m really looking to dig into something very specific, like navigating healthcare, and I really don’t want to think about symptoms or food or exercise, I can just zero in on that one thing,” she says.
“Sometimes I want to look at how other folks are managing their work. Work is complicated right now, and having a space to discuss it that’s free of politics, tricky friendships, and colleagues is a game changer,” Gottlieb adds.
Wendy Rivard, who blogs at Taking the Long Way Home, agrees.
“In the past when I’ve participated in RA support groups, the topics are all over the place and sometimes not pertinent to my situation,” she says.
She enjoys the lifestyle and mental and emotional health groups.
Emrich posts most often in the Escape from RA, Lifestyle, Daily Life, General, and Medications groups.
“At this point in my RA journey, these are the topics that personally interest me. I’ve also visited some of the other groups in order to offer words of encouragement and personal experiences to those members who are looking for input and advice,” she says.
The groups feature reminds her of an old-fashioned forum with different sub-forums for various topics.
“Threaded replies make following conversations easy, which in turn helps us all to support each other within this growing RA community,” Emrich says.
Every day, the RA Healthline app matches users with other members of the community. Members can also browse member profiles and request to match instantly.
If someone wants to match with you, you’re notified right away. Once connected, members can message and share photos with one another instantly.
Gottlieb says the matching feature gives her strength during her most difficult days.
“A friend recently told my husband that I’m the fittest woman she knows. And that was a day after I’d cried in my office because I wanted to run and I couldn’t,” she says. “I usually run about 3 miles, and that day my legs felt like they were trapped in sludge.”
“In addition to not getting the endorphin rush I was looking forward to (and clearly needed), I was reminded that I will never run another marathon, that anything more than 5 miles will leave my feet feeling like they’re made of glass, and that for the rest of my life I will be a patient,” Gottlieb says.
While she’s grateful for medicine, she still has tough days.
“The people on this app understand that we can be grateful for what we have and still mourn the loss of our health. It’s affirming in so many ways. RA is an odd thing. My life has changed, and I’m lucky because drugs worked for me. What people don’t see though is frustrating,” she says.
Rivard can relate. Because many people she’s close to don’t have RA, the ability to instantly connect with someone who has firsthand knowledge of what she’s going through helps her feel less alone.
“And that I’m not the only one with that issue or concern,” she says.
If you’re in the mood to read rather than engage with users, the Discover section of the app includes articles related to lifestyle and RA news, all reviewed by Healthline medical professionals.
In a designated tab, search articles about diagnosis and treatment options, as well as information about clinical trials and the latest RA research.
Stories about how to nurture your body through wellness, self-care, and mental health are also available. And you can even find personal stories and testimonials from those living with RA.
“The Discover section offers a well-curated collection of articles from Healthline that address more about RA than diagnosis, symptoms, and treatments,” says Emrich. “Right now, there is a featured collection of articles discussing mental health that I find particularly helpful.”
Rivard appreciates having access to well-researched, vetted information at her fingertips.
“I am a nurse practitioner, and so I love good, evidence-based information. The information in the Discover section is reliable and that is very important, especially right now,” she says.
“Signing up for the RA Healthline app was easy. You can share as much or as little information about your specific case of RA that you wish,” says Emrich.
“I really appreciate the ability to upload several photos to your profile that speak to who you are and where your interests lie. This small feature really makes the app feel more personal,” she says.
A sense of ease is especially important in today’s times, adds Gottlieb.
“This is a particularly important time to use the app. When I was newly diagnosed, social media users helped me navigate my new normal. That will not happen right now, so finding a spot like RA Healthline is very special,” she says.
“You don’t have to participate in politics or COVID talk or offend people by not wanting to have these discussions,” she adds. “Yes, they are relevant, but when your body is working against you, it’s critical to get a rheum community together to share information, inspiration, or even just a few puppy photos.”
Cathy Cassata is a freelance writer who specializes in stories around health, mental health, and human behavior. She has a knack for writing with emotion and connecting with readers in an insightful and engaging way. Read more of her work here.