Social Media Is Helpful
For years I avoided all social media. It was tempting to join. I would hear my friends at church talk about each other’s losses, victories, parties, and life events. I did feel like I was missing out, but I also knew I had a tendency to overthink and even obsess about why and how I should share my life. So publicly? With strangers? So I felt like the benefits were outweighed by my desire for privacy, eye contact, and simplicity. Maybe it was good to have a little more free space in my heart and day to spend with my kids, making memories and teaching school, rather than spending time online.
A Place to Learn and Share
And then the clinical trials for the new antivirals for hepatitis C came out. It tipped the scale of drawback to benefit. Here was this amazing resource for me to read and learn first hand from people in the trials. Side effects. Efficacy. And then when the reports of a cure started streaming in through various Facebook groups and media outlets the excitement and camaraderie of sharing in each others cure were amazing. I still love to see those posts. I’m cured! I achieved SVR! Only 2 more weeks of treatment…SO encouraging. People who had failed 6 treatments over 30 years were achieving a sustained viral response (SVR) on these new medicines.
So that was my initial reason to join the social media world. So much good information, so many beautiful relationships. Then my husband, James, started a foundation on my behalf when I nearly lost my life to hep C and social media became a big part of growing and serving the hepatitis C community. I have said many times and firmly believe that if we are going to beat hepatitis C, we are going to have to do it through social media, the Internet, health forums.
Real Connections Can Be Made Online
I have made lifelong friends online. Years ago, several of us homeschool mommies chose names through a secret sister network to pray for each other, send gifts, encouragement, and recipes. The gal I chose has become my dearest friend. She and I have encouraged each other through marital problems, loss of a child, and surgeries. She recently visited from the other side of the country and we talk almost every day through text or Facetime. I have loved and been loved through social media. I have learned so much about hepatitis C during my own treatment and my husband, James, has built a Facebook following of almost 20,000 that he shares hepatitis C information with every day.
Social media has been an invaluable resource for so many who struggle with hep C in particular. This is because it can be completely anonymous. Doctors spend minutes with us and leave us so many questions. It’s nice to be able to learn from others who are just a little farther ahead in the game.