For years, Johnson, a hairstylist, held off telling her clients about her hepatitis C for fear they'd think it was contagious. When she decided to go through treatment, she start to tell them about her diagnosis. "I had to tell each and every person and encouraged them to research and speak to their doctor," she recalls. "They were so supportive."
With the stigma associated with hepatitis C, most people aren't willing to upload their own YouTube videos, and in some cases, even avoid using a pseudonym for fear of being identified. Many of those who have a presence on YouTube find themselves bombarded with private messages and emails from sufferers unwilling to publicly speak out.
"I just answered a young man today who's finally going to speak up and do something about his disease," says Johnson. "He said he hasn't had a relationship in 10 years because how do you tell somebody that you carry a virus without them fearing or worrying for their own health?" One girl contacted Johnson shortly after she received her first Interferon injection. "She was just sitting in her car because she couldn't drive. She said 'I watched your videos, they helped give me a lot of courage, but now I can't even drive, all I can feel is the medication fuming up in my lungs and I'm scared to death.'"
Reau considers the hepatitis C stigma one of the biggest hurdles for battling the disease. "It's hard for our patients to admit to the risk factors," she says. "So when you're asked, 'Did you ever do IV drugs?' or 'Did you have multiple sexual partners?' – these are questions that are very difficult to ask and very difficult to answer."
Because of this, many who are at high risk for the disease never get tested. "Even when we do test for it, we either aren't convinced that people need treatment, or we're not doing a very good job of explaining the risks and getting people into treatment." YouTube, because of its ubiquity, can act as a counterbalance to this; nearly all the YouTube users interviewed for this article said they've received emails from viewers who admitted they went to get tested after seeing one of their videos.
The process of shooting a week-by-week video update has its therapeutic benefits as well, with several of those saying the support viewers offer, both in the comments section and in private messages, helps them get through the toughest challenges. "When I was on treatment that year," recalls Hoffman, "I did more and accomplished more than I ever have. I took an online marketing course, I was running support groups, and I finished writing a book." For Mulnix, it provided a venue to keep friends and loved ones updated on her progress. "I could just direct people to my YouTube channel and they can sit there and watch it at their own leisure and figure it out."
But what happens when you've reached the end of your treatment and achieved a cure? Mulnix says she felt extreme guilt when she stopped posting. "I feel really bad about it. I get emails all the time saying, 'Oh my god, what happened?' I've been meaning to post a conclusion." Johnson found herself posting a video a year after her treatment ended, and she found it difficult to simultaneously express the relief of reaching a cure while being respectful of those who hadn't yet done so. "What I couldn't do is go on and on about how great it was to be alive and away from [hepatitis C] when every day I'm being contacted by people that either have loved ones who have [hepatitis C], they're going into treatment, they're in treatment, or they failed treatment," she says. "And I refused to sit there and say 'Life is so good. I get to actually enjoy a glass of wine. I'm riding my bicycle. I'm so great.' I couldn't do that, so I just left it very straightforward: 'Thank you for the support. I'm here to support you. We're a heck of a community.'"