RD, the Internet, and Me
A lot of things have changed—for the better—about living with rheumatoid disease.
For one thing, there are many new, much more effective drugs available to treat it now. That’s tremendous and life-changing, for sure. But there’s something else that stands out for me, as well: the huge role the Internet and social media now play in our lives as we live with this disease.
When I first started using the Internet as a journalist in the mid-1990s, I had no idea what a profound affect it would have on me as someone with rheumatoid disease. Of course, that was B.G.—Before Google. In those early days, finding specific information online usually involved a tedious, convoluted, and frustrating search using crawlingly slow dial-up connections and clunky search engines that barely merited the name. Frankly, I preferred going to the library and looking facts up in books. It was faster.
Then cable connections and Google happened, and within just a couple of short years the world opened up like a treasure chest.
When my RD awakened from a long remission in 2005, I turned to The Google for information. At that time I knew only a few basics about RD: that it was an autoimmune disease (whatever that was), that it attacked the joints, that it could cause permanent disability (though it hadn’t done that to me, yet), and that there was no cure.
Boy, was I in for a surprise. I quickly discovered that, unlike how it’d been following my diagnosis in the late 80s, now there were amazing new drugs that drastically slowed or even stopped the disease from progressing. They worked near-miracles for many people.
But the Internet told me some scary things, too. Dr. Google said, on good authority, that RD can also affect the linings of the heart and lungs, the vascular system, the eyes, the connective tissues, and can even cause death.
My doctors hadn’t seen fit to tell me any of that.
A few years later, when my symptoms worsened still more, I finally sought help from a rheumatologist. He treated my disease aggressively with several DMARDs and a biologic. And although my RD continues to progress, it’s doing so very, very slowly thanks to those miraculous new drugs. I’m almost afraid to think about how I’d be now without them.
Knowing a lot about my RD was great—but scary, too. Ignorance really can be bliss. I had no one I could talk to about it who really understood my concerns and, yes, fears. My family listened, but it wasn’t long before their eyes started to glaze over, and I worried that they’d think I was obsessing, or worse, fishing for sympathy. After awhile, I mostly kept my thoughts to myself.
So, one evening in 2009, as I was surfing the ‘net, it occurred to me that maybe someone out there might be blogging about rheumatoid disease. So, I asked Dr. Google, and sure enough, a short list of RD blogs popped up. It was like finding a second treasure chest!
There were some truly wonderful and informative blogs out there. After reading and following them for a while, I started thinking about blogging, myself. After all, I was a writer with journalism skills, I’d had rheumatoid disease for over 20 years, and I’d learned a lot about it and how to live fairly well in spite of it. Maybe others would find my blog. Maybe they’d comment on what I wrote, and maybe we could have a virtual, online conversation about it! A blog about RD could be a place where we could talk about living with this disease to our heart’s content, and we’d empathize with each other.
So, I created RheumaBlog. Before the first year was out I’d gained a small-ish but ever-growing circle of readers—of friends—who also had RD. And like I’d hoped, we all understood and supported one another.
Internet instant chat services and blogs were the forerunners of what we now call “social media.” Today, not only are there a myriad of blogs and websites that focus on rheumatoid disease, you can open a Twitter account and, in almost no time, find yourself talking to people from all over the world—in real time—about living with it. There are all kinds of people, of course, but I’ve found that those within the RD community are mostly kind, compassionate, helpful, empathetic, and supportive.
Twitter isn’t the only social media platform out there, of course. FaceBook (and Facebook Messenger) is another excellent place to connect with others who have RD. And let’s not forget Google+, Instagram, Snapchat, Pinterest, and Skype.
I may not know anyone in my everyday life who has RD, but I’ve gotten to know and talk to many RD patients like me through social media, particularly Twitter, almost every day. Because of the Internet, I don’t feel isolated and alone with this disease anymore.
Come say hello! My handle on Twitter is @RheumaBlog_Wren.