If you contact the local health departments, there are zero reported cases of Lyme disease in our area. The CDC would claim that West Virginia is not an endemic state, even though I was bitten and infected here in our beautiful mountains.
In the early stages of my illness, I was struggling just to breathe. As I began to improve, I did what I’ve always done when I feel scared or confused; I read… a lot. I bought every book on Lyme disease I could find –less than twenty, by the way. I read research articles and Lyme disease awareness websites. I empowered myself the only way I knew how –with knowledge.
Still, even as I became more Lyme savvy than my doctor (his own words), there was a deep struggle beyond the pain and fatigue. Although dozens of friends, family and students rallied behind us, sending food and saying prayers, there were times when I felt completely and utterly alone. I knew no one else afflicted with the same disease as me, and because of our location, I felt terribly isolated.
Then I was introduced to a friend of friend, Susan, via Facebook. She, too, was learning to navigate the confusing and complicated world of Lyme. When we were both physically able, we spent hours chatting online. Sometimes we vented, sometimes one lifted the other up, sometimes we offered suggestions. But every time I “talked” with Susan, an odd thing happened.
Even though we’d never met in person, I felt less alone.
These connections continued as I created this blog. I developed friendships with other Lymees. I began advocating for individuals who’d just been bitten and needed to know what steps to take to be safe. I started getting phone calls and text message at home. Friends referred loved ones to me. Readers referred non-readers. I joined online support groups for Lyme disease and chronic illnesses.
The world began feeling smaller, and I felt like I was part of a community.
Social media allows us access to support, information, and stories of hope. Did you know that chronic disease in the United States has been steadily increasing for decades? Forty-five percent of U.S. adults now have at least one chronic condition. By 2030, that number is projected to reach 50 percent. Wow.
The fact is, now more than ever, we need each other. That’s why I’ve created the group Chronic Community Care, a Facebook group designed for individuals learning to live with a chronic illness. The group will be a safe place for you to vent, to ask opinions, to find motivation, to feel a little less alone in your journey.
Please join the Lyme Lives in WV Facebook group, and if you know others who would benefit from this online support system, invite them to join as well. Once you are part of the community, please be sure to participate in discussions when you are able. After all, without communication, we’re still alone.
If we have to take this journey, let’s at least walk it together.
I’ve yet to hear my friend Susan’s voice, but I know her hand is in mine always.
Check out this article on the benefits of living in a wired world for those struggling with chronic illnesses.