Connecting with others who share your same health journey brings great comfort. Turning to the internet can help expand your circle of connections.
According to a WEGO Health behavioral intent survey of 433 online community members from seven different health communities, including rheumatoid arthritis (RA), 91 percent of participants said online communities, such as those found on Facebook, blogs, discussion groups, or other social media sites, play a role in decisions they make about their health.
Those living with RA find online communities particularly helpful. Of the respondents living with RA, 95 percent said the role that online communities play in their health decisions is “extremely important” to “somewhat important.”
After living with unexplained and misdiagnosed chronic pain in multiple areas of her body and experiencing constant infections, fatigue, and emotional disturbances for years, Eileen Davidson was finally diagnosed with RA 5 years ago, at the age of 29.
After her diagnosis, she turned to digital communities for support and also created her own blog, Chronic Eileen, to advocate and educate others about arthritis while making sense of her own journey with chronic illness.
“I find it important to have a few communities and resources you look to for support and advice because I learn more by doing my own research. However, they need to be medically accurate,” Davidson says.
That’s why she is using RA Healthline, a free app designed for people with diagnosed RA.
“Healthline has always been a website I can turn to for trustful information with many different parts of my health. I am excited they have an app specifically for rheumatoid arthritis now,” she says.
Ashley Boynes-Shuck, 36, agrees. She has been living with RA since she was an adolescent. Over the years, she used Facebook, Twitter, and other websites to find RA information.
“RA Healthline is the only one that’s been solely dedicated to RA patients, which is amazing,” says Boynes-Shuck. “It’s very unique.”
Alexis Rochester, who received an RA diagnosis at age 10, is using the app for the same reason. While she hasn’t used a social-based community for RA, she has engaged with others who struggle with RA via her blog Chemistry Cachet and Instagram.
“RA Healthline is so different because it is a complete community of people with the same diagnosis. Everyone on the app has RA, so you know it is a community of people struggling with the exact same issues,” said Rochester.
RA Healthline allows users to feel accepted and understood in a safe place.
“It’s a place where you don’t have other people telling you what to do who don’t have the same diagnosis you do,” says Rochester.
“I think many people who have been diagnosed with RA go through a little bit of judgment from others. Friends might say, ‘Oh, I have RA too, but I cured mine with diet. You should do this too to cure yours.’ Then you find out they never even went to the doctor for theirs,” she says.
Having a community of people who completely understand her struggles is invaluable.
“Yes, you might be doing all the good things with diet and exercise, but you still have pain and swelling, so you need to take medication. It’s so refreshing to connect with other people who understand exactly what you’re going through,” she says.
Rochester’s favorite part of the app is the daily group discussions feature led by someone living with RA.
- pain management
- alternative therapies
- mental health
- social life
“You can click on any category and see what other people are doing, trying, and liking. Everything has a category, so you can really narrow it down,” says Rochester.
“I like seeing other members’ experiences and talking with them about it. For instance, if you want information about medication, there is a category for that. Every chat in this section is about medication, so it makes it easy to navigate,” she says.
Davidson most appreciates learning about how to live an overall healthy lifestyle with RA from others doing it themselves.
“While you can learn a lot from your doctors, those with lived experience speak a certain language that only we understand. We are rheum-mates,” she says.
Organization of the app makes it easy to navigate, she notes.
“[I like] how neatly organized each category is — perfect for those brain foggy days and sore hands. I often feel well prepared and equipped with knowledge reading up on information on Healthline,” says Davidson. “I’m grateful to have such easy access to that information now.”
Getting matched daily with other members based on similarities is Boynes-Shuck’s go-to feature. The matching tool allows members to find each other by browsing profiles and requesting to match instantly. Once connected, members can begin messaging each other and sharing photos.
“I think the matching feature is one of a kind. It’s like an ‘RA Buddy’ finder. So neat,” she says.
Because the app is right on your phone, accessing it is convenient.
“Community, privacy, information, and support all in one well-organized app! The app is amazingly mobile-friendly, which is great for when you are waiting between doctor appointments and need some advice from others or Healthline’s medically accurate reviewed articles,” says Davidson.
You never have to feel alone, adds Ashley Boynes-Shuck.
“It is a unique platform that is a safe space for patients who may otherwise feel isolated. It provides great resources, inspiration, and support, and allows all patients to feel seen, heard, and valued,” she says.
Feeling less alone is the app’s greatest benefit, says Rochester.
“It’s like hanging out with your friends. If you have felt alone and embarrassed with your struggles, the members on this app have gone through it too,” she says. “We all have the same struggles, pain, medication issues, and more. It’s really a unique way to be with people just like you.”
Cathy Cassata is a freelance writer who specializes in stories about 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.