When I was first diagnosed with hepatitis C in 2010, I struggled to find people who understood what I was going through. My family didn’t know much about it, and my friends couldn’t relate. I wasn’t telling my boss. After a while, I started to feel cut off from society. Late at night, when the rest of the world was asleep, I reached out by typing a few search words into my computer.
At that time, there were very few real-life stories about hep C online. More often than not, I found a mix of complicated medical advice and horror stories. Sometimes the information overload was too much for me, and I had to log off.
I wanted to find a place where I could have a good experience learning about my illness, so I kept digging.
Eventually, I came across some sites that provided clear-cut information about hep C, and it was such a relief.
I was able to learn how to eat a healthy diet and stay fit while preparing for treatment. There was a virtual treasure trove of resources to help to reduce my fear and dispel myths about the disease. When I found real people who had the virus, it gave me hope that I could make it through this experience alive. Blogs gave an insider view, websites were updated daily, and forums let me interact with others from the comfort of my own home. Social sites kept me connected all over the world.
Here are some of my favorites from over the years.
Hep C blogs and websites
There are a few bloggers with hep C who write up-to-date posts about their story before, during, and after treatment. They offer personal support and encouragement, with a behind-the-scenes viewpoint. Similarly, some of the websites I found offered credible information, but break it down so that patients like me can better understand it.
Lucinda Porter, RN, was the first hepatitis C blogger I followed. Her perspective is medically based and highly professional because she is both a nurse and a hepatitis C patient. Her stories and information are both accurate and humorous.
Life Beyond Hepatitis C
Connie Welch at Life Beyond Hepatitis C offers faith-based guidance for patients and caregivers alike. Her kind words are like a healing balm to those looking for any type of support.
Started by Alan Franciscus, HCV Advocate is a haven for those living with hepatitis C. It’s a comprehensive source of patient-friendly information from peer-reviewed journals and liver conferences. The site is famous for fact sheets and up-to-date treatment options. Available also in Spanish, HCV Advocate offers the basics about everything from clinical trials to current medical literature.
HepMag.com is the premier one-stop shop. The focus is all hep C, all the time. Look for feature stories, new treatment options, blogs, and forums. The factual information and daily newsfeed are easy to navigate and updated daily.
Pacific Hepatitis C Network
Based in British Columbia, the Pacific Hepatitis C Network (PHCN) helps Canadians to access information, patient education materials, and the latest updates on medical policy in the province. It’s also one of the few organizations to provide a peer-to-peer toll-free telephone helpline.
Forums and social media
Forums are a great way to read and engage in online conversations with others living with hep C. You can ask questions, jump into a chat, or just stay anonymous and read what folks are saying. I joined a few early on and found a lot of help. Most people are careful what they post, but occasionally you might read an inaccurate or anecdotal story. Always be sure to use your own judgement.
Here are some of the forums I frequent:
Social media is another great way for people to share common ideas. It’s easy to find people just like you on just about any social forum: Facebook, Instagram, Twitter, and Snapchat can all provide instant connections. There are even private communities where you can ask questions, share thoughts, and find personal help for just about anything related to the hep c. Just type “hepatitis C” into the search box and join in the discussion!
These Facebook groups provide a great foundation for any questions you’re looking to answer:
It’s important to seek out people who share your experiences with hepatitis C. Knowing that you have a community — even an online one — behind you can boost your confidence and help you feel more empowered as you make important decisions. Just remember: Any advice or stories read on the internet aren’t a substitute for your doctor’s opinion or expertise. Always be sure to bring any questions to your medical provider.
With the internet, no one has to go through a health crisis alone — information and support are just a click away.
Karen Hoyt is a yoga-teaching, shake-making, fast walker who resides in the woods of Oklahoma. She is the author of “The Liver Loving Diet” and your best friend at ihelpc.com. Follow her on Facebook and Twitter.