Your peeps are out there, you just need to hit the right keys. Here’s how to find the right rheumatoid arthritis support online.
Living with rheumatoid arthritis (RA) can feel very lonely. Since this condition affects just about 1% of the population, it’s rare to meet others with RA in real life. Going online to find a supportive and understanding community can be one of the best things you’ ll ever do for yourself. You can bounce treatment options off others who’ve already tried them, commiserate about flare days, and sometimes even find real friendships. But every now and again, you might end up in a place that will do more harm than good. In this column, I’ll share tips to find the online groups that will feel like coming home and some of the signs that you should go elsewhere.
How I Found My Community
I have lived with autoimmune arthritis since I was four years old and aside from several years spent in hospitals as a child alongside other kids with similar diagnoses, I never knew anyone else with RA for most of my life. It made me feel very alone and isolated, but also exacerbated my sense of being different from everyone around me.
Fast forward several decades to 2005 when I started my blog “The Seated View” and that all changed. My blog allowed me to connect with other RA bloggers who understood how I felt on a deep, been-there level. Those connections made a tremendous difference in my experience with RA. I’ve learned so much from this online community of people who have supported me and made me laugh for almost 20 years. Many have become friends and I’ve even met several in person. And let me tell you: There’s nothing like the hug you get from a long-time friend you’re meeting in person for the very first time.
Finding my peeps (as I call them) has been a journey of hits and misses and every so often a few cautionary tales. I’ve tried groups where thin-skinned moderators kicked people out with no explanation and in others, posts regularly devolved into the virtual version of screaming matches. Neither of these felt supportive. To help you find your virtual community sooner, consider the following factors:
Find the right vibe. You can home in on your RA peeps on any social media platform and they may in fact overlap on several different ones—for instance, I have slightly different communities on Facebook, Instagram, and Twitter. Locating your community on any platform starts with a search of the term “rheumatoid arthritis” and a few hashtags, such as
Begin by following a few of these hashtags and jump into the conversation, leaving comments and sharing your own posts. Through this, you will make a variety of connections. Some will focus primarily on social media, others may be bloggers, and yet others may mostly share insightful or funny memes. One of the great things about social media is that there are so many ways you can use it, as well as having the ability to very quickly connect to people whose posts and messages resonate with you.
Ask yourself if privacy is important. Much of the online community happens in public, which means anyone can potentially find your participation in conversations about your health. If you are not “out” about your RA to certain people in your life, for instance your work, you may want to focus more on private groups, like the ones on Facebook. Access to such groups is often moderated, requires answering certain questions to qualify for membership, and approval by the admin or moderator of the group.
Although these kinds of groups are more private, do keep in mind that there is no such thing as 100% privacy on the Internet. If even a slight risk of your life becoming public through hacking or theft of information makes you squeamish, you may want to focus on “lurking,” meaning reading blogs or receiving email newsletters from bloggers and advocates you like without officially joining a group.
Do you trust the admin of the group? There’s a saying that applies to any team: “The captain sets the tone.” That also applies to online groups. Make sure you check out the creator and admins of the group, their public content, and their reputation in the community. Are they seen as trustworthy and valued members of the community? Do they have a reputation for sharing credible information? Are they perceived as kind and inclusive?
Do you like the content? The person (or organization) who created the group had certain intentions about its purpose and whether they run the group alone or have enlisted other members as admins/moderators, it is that intent that will guide the content of the group. If the group is focused primarily on selling a product, but you are looking for emotional support, keep looking until you find what you need. As well, fact check any information shared in the group to make sure that it doesn’t promote unreliable or even dangerous health information .
Know the rules? Groups have different vibes. Some are more relaxed and create a community of friends, whereas others may have very strict rules about what you can and cannot post. They may be very good reasons for those rules—make sure you read and understand them—but they can also feel restrictive to some. As well, groups that aren’t well moderated may develop cliques or an environment where disagreements and fights break out. As with all social media, remember that you are there to feel safe and supported. If that doesn’t happen, feel free to leave or block or mute any accounts you don’t enjoy.
Don’t limit yourself. Just as you probably have accounts on different social media platforms, you can also belong to several different groups. Each group has a slightly different focus and vibe that will feed different parts of you. For instance, one group might be mostly about chronic illness humor , another focuses on information, and yet another is about advocacy or crafts with RA. You are a multidimensional person and as such, will respond to different types of sub-groups. Join as many as you’d like.
Connecting to your community online starts with following accounts, hashtags, and becoming members of groups, but it is also important to know about the algorithm, the technical programming that determines what you see on social media. A social media platform will serve you content depending on what you do.
If you don’t want to miss new activities through groups or other accounts, make sure you pop by on a regular basis to participate and engage with posts—that is like, share, and comment. This serves two purposes. One, telling the algorithm that a particular account, hashtag, or group is important to you so it will keep appearing in your feed. And two, frequent participation means you create stronger relationships. Who knows, some of them might even become true friends that you’ll get to hug in the future.