Hepatitis C is a social media topic, and my primary communication tool. I have a love-hate relationship with social media. I love the relationship with the hepatitis C community, the dialogue, the way I am humbled by those that send me comments or emails. My biggest pet peeve about social media is the infectious nature of bad information. Also, I don’t like that moment before I hit the “send” button, wondering if I wrote something that may sound careless or idiotic. Or worse, those moments when I actually post because I feel strongly about an issue. In fact, someone should have locked my computer away when I was on hepatitis C treatment. It is amazing I still have facebook friends and blog followers.
Despite mixed feelings about social media, I see it as a tool for health. When we post, we invite feedback. Web-based groups are fabulous resources for those undergoing hepatitis C treatment. When someone asks what to do about a hepatitis C treatment-related rash, people will send tips and support and lots of sympathy. If a newly-diagnosed patient joins a web-based support group, hundreds of virtual hugs and pats on the back appear to help that person along.
Underneath it all, what I most value is the sense of community I feel. There are moments that my heart is ripped open wide witnessing the courage that hepatitis C patients exhibit every day. Social media can be a lifeline, particularly for those who are isolated either by illness or geography. Most of all, social media reminds us that although we may have hepatitis C, we aren’t alone.
HOWEVER, I pray I never forget that Internet connectivity is a luxury. Many of our fellow hepatitis C brothers and sisters are alone, in poverty, and unable to connect to a medical system let alone to a computer. I don’t want this week’s World Hepatitis Day to be limited to one day--I want it to be an opportunity to change the world. As I make my goals as to how to raise awareness about hepatitis C, I prod myself to remember those who will not be turning on a computer or using a mobile device. Then I give thanks for the luxuries in my life, including my health, my computer, and you.