I won’t deny that I love the Internet. I’ve been an avid website explorer, both for fun and for work, since the late 1990s. (Yes, I know how old that makes me. Shut up!) But it wasn’t until this year--January, in fact--that I learned to love social media.
In fact, before that, I barely knew what “social media” pertained to. Oh, sure, I’d been writing RheumaBlog since 2009, and another one before that since 2006, but I didn’t connect them with the words “social media.” Those I reserved for Facebook--which I’d decided I didn’t like very much--and Twitter, which I knew next to nothing about. Actually, I’d opened a Twitter account not long after it first appeared out of curiosity, but I had no idea what to do with it. Who in the world would want to know about my non-exciting life, I thought bemusedly. Who’d care that I’d just folded my laundry and was about to scrub the toilet? I promptly forgot all about it.
Fast forward to last fall, when I attended a conference for health bloggers. To help us reach more people--and help more people--our hosts suggested that any of us who hadn’t already started using Facebook and Twitter do so. Right away. We’d be surprised, they said, what could happen. We should also try Instagram, and Snapchat, and … well, you get the jist.
I had a Facebook account I used mainly to see what was going on with my family. I didn’t use it much, and I really didn’t want to use it to talk about my rheumatoid disease. So I made a brand-new Twitter account and waded in, unsure of myself. I still felt like no one would be very interested in anything I had to say, so instead, I started “following” some of the people who’d been at the conference with me. And, as I read their tweets, and realized that there were conversations taking place about things I did know something about, I joined in. The more I tweeted, the more replies I got. People started following me! I followed more of them. Back and forth it went.
I’m proud to say that as of this writing, I’ve “tweeted” over 6,000 times, followed more than 400 very interesting people, and have 632 followers of my own. When I pull Twitter up on my laptop or on my smartphone, I’m instantly in the middle of several conversations about everything from rheumatoid disease to world news and politics (I’m still a journalist at heart) to art and illustration.
Since rheumatoid disease is my focus, though, both here at RheumatoidArthritis.net and in my daily life, that’s the aspect of my social media involvement I want most to tell you about. Here’s the biggest, most important, most Earth-shaking thing I’ve learned since January:
I am not alone.
With the exception of the people I met at that conference I attended last year, I’ve met only one other person with autoimmune arthritis since my diagnosis in 1987. One. That person didn’t even have rheumatoid disease; he had ankylosing spondylitis. We only met briefly, just about long enough to exchange condolences and talk a little about the merits of heat vs. ice for aching joints, and then we went off on our own journeys. I’ve often wondered how he was--and I’ll never know.
So, because I’d never met anyone else with RD, I felt extremely isolated. Being able to finally learn more about it via the Internet, starting in about 2000, helped a lot, but there was still no one I could talk to about it who could really understand and empathize with how I felt.
I know I’m not the only one who’s been in that situation. He we all are, after all, stuck with a disease that causes sometimes excruciating pain, miserable malaise and fatigue, and even disables us either temporarily (if we’re lucky) or permanently (if we’re not), and there’s no one like us anywhere around to talk to about it. It’s incredibly, heart-achingly lonely.
Writing RheumaBlog helped me a lot. There, once it had been online for a while, I started getting comments on my posts, and after a while got to “know” some of the commenters, at least in that one, small place in the blogosphere. It was nice, knowing that there were others out there who understood--and more importantly, cared.
But oh, my, Twitter. On Twitter, I am never alone with my RD. There are always others there to talk to, people who understand and care. I can be honest about how I’m feeling, whether it be physically or emotionally. I don’t have to pull punches, like I often do in meat-world. What I love most, though, is that I can listen to, care about, and encourage others, as well. One thing everyone I've met on Twitter and I agree about--and we’re all from vastly different walks of life--is that there’s nothing as precious as the camaraderie we share on the Twittersphere.
I copied some recent tweets as an example. Some of these people know each other via Twitter, others don’t. All were speaking from the heart:
"We keep each other going. Online support is so important. We're isolated but in touch w/each other."
"We really do have an awesome community. Filled with knowledge and empathy."
"Social support is very important for all genders, not one over the other. Just because I'm male doesn't mean I don't feel alone."
"Social media is a godsend to me when I'm too ill to go out and connect with friends, as well as being a source of info."
"As a #raredisease patient I've obtained life saving info from social media that I've shared with my HCPs." (health care providers)
If you’re not using Twitter, I’d like to invite you--encourage you--exhort you--to give it a try. You are not alone. You don’t need to be a millennial or younger--I’m a Boomer, dang it, and I tweet every day. People do care what you have to say. They are interested. It’s easy to get started--and once you’ve opened an account, I’d like to invite you to come and say hi to me. My Twitter address is @RheumaBlog_Wren.
I’m waiting to have a real-time, real live conversation with you. Or, you can find lots of other people with rheumatoid disease and other chronic illnesses by using the hashtag #ChronicLife.
The Internet is an incredible tool, isn't it?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?