Send Me More Stories About Immune & Autoimmune Diseases
Josh Robbins’ first step towards becoming an HIV activist came just weeks after his own diagnosis, when he shared the news that he was HIV+ in a February 2012 Facebook post. “I wanted people to hear it from me,” he says. “I wanted to tell my own story, but I also wanted to be a resource to people in my community, really anybody, related to HIV.”
Since that brave admission seven years ago, Robbins has expanded his social media education and advocacy.. From his home base at ImStillJosh.com, Robbins maintains an active social media presence on Facebook, Instagram, Twitter, and YouTube. Healthline.com selected I’m Still Josh as one of 2018’s best HIV blogs, and the National Gay and Lesbian Journalists Association has recognized it for excellence.
Besides his blog and social media, Nashville-based TED-X talker Robbins regularly speaks to university and other audiences, offering inspiring and practical information for those living with HIV and those who care about them. We spoke to Josh to learn more.
John-Manuel Andriote: What interested you in being an HIV advocate?
Josh Robbins: I didn’t know I was signing up to be an HIV or peer advocate for activists when I started my blog. I just wanted to be able to tell my story in a way that was honest and authentic and real. In doing that it became relatable. I also did it because when I was diagnosed I couldn’t find anything online for someone who looks like me. The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson. I was 29 years old at the time and no one had told me in my life that they were HIV-positive, so I was literally the only person I knew that was positive. I was kind of lonely, and I didn’t want other people to feel lonely. That’s why I started the blog and social media accounts.
The only thing I knew [about HIV] when I was diagnosed was the movie Philadelphia and Magic Johnson.
What sorts of issues and concerns do you see in people living with HIV that are similar to, or different from, those of people living with other chronic conditions?
I say in my talks that we’re all dealing with something. My mom has MS. She and I have a lot of similarities just in terms of autoimmune disorders and how things affect us in our bodies and that sort of thing. I think the stigma for some people living with diabetes is very similar to that of someone living with HIV from a perception standpoint. I think people that live with psoriasis a lot of times get judged, obviously for their physical appearance.
I think people who are living with chronic health conditions understand that stuff happens, and that we’re all dealing with something. So I think there are similarities in exploring a condition, learning about it, researching it, finding peer support, making sure your adherent to your treatment and medical plan. And then there is all the stuff you have to deal with in dealing with doctors, getting to appointments, and the financial stress of dealing with a chronic condition. I think those are some of the concerns that are pretty similar.
Have you experienced stigma related to HIV?
Yes I think I have, specifically in relation to potential dating partners or sexual partners. There’s always a lack of education and information. I understand because before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV, because I was scared anI didn’t want HIV and so I didn’t even think about it. I just didn’t want to have to deal with it and I thought that would work.
As far as other stigmatizing stuff, I don’t experience a ton of stigma because I also speak out against it. I think people, particularly people I know, are either gaining education and learning as well or they are certainly not just going to say some crazy things to my face because they know that I’m going to reply.
I did lose my best friend through this. I think it’s a situation where she couldn’t deal with the possibility that people would be really mean to me. She dealt with it with the way she knew how, which was to run away from me. That was really tough and hard.
Before I was diagnosed, I was one of those people. I blocked people on dating apps because they had HIV…
People living in Nashville are very aware of my activism. If they are in the country music field or space, and they have to think about the group of people they’re around I am a liability to their reputation. I don’t think it’s fair but I think that happens. I have had more than one friend who was an artist who walked away from a friendship with me. That kind of sucked, but that’s how it goes. It is important for me to say that even with that, I still will not shut up about HIV and trying to help people who are living with the virus to live better lives or help people who are negative to stay negative with prevention.
It was a decision I had to make, and I did make before I started my advocacy, which was: I could never be in love again, I could never get married, that’s a possibility. I could lose my friends, I could lose my family, though I didn’t think that was a possibility. I could literally be standing by myself alone and I would still take the decision that I was going to speak up. My safety wasn’t a concern, and it was right for me. So that is how it went down.
When did you learn you had HIV and what were the circumstances?
I was part of an HIV vaccine study with Vanderbilt University. I got regularly HIV tested. I was actually diagnosed very fast. On, November 30, 2011, I was HIV negative. On December 18, 2011, I was exposed to HIV and I got sick on January 2, 2012. I got my final diagnosis on January 24, 2012.
All of that happened because I was a volunteer in an HIV vaccine study, a clinical trial. One of the huge benefits for me of being in that trial was that I was able to get a diagnosis so quickly. I was immediately linked to the care I needed. People I trusted, because I had been part of that vaccine study for over a year, those were the people who delivered the news to me. So I wasn’t in a foreign, stunted setting. I was in the clinic where I was used to being, and had a good rapport with the staff and director. So even though I didn’t want that diagnosis, I got that diagnosis from people who were so caring and so authentic and meaningful. For that I am eternally grateful to them.
How many hours a day, on average, do you spend on social media?
It’s my job, so I’m on social media in some form maybe 15 hours a day. It sounds insane, but it’s true. I do try to step away from it sometimes and you will see that if I’m taking a break. But at the end of the day I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible. It’s not always possible, but I do try to respond quickly to those messages. They come through every relevant social media platform that I’m on. Luckily, I’m in a position of influence, and I have a responsibility that is sometimes overwhelming to respond to these people and try to help, or at least listen, and that is what I try to do.
I’m constantly receiving messages from people who may have just received a diagnosis. I know that’s the worst day of their life and I try to respond to them as quickly as possible.
Do you have any advice for others to help build up their social media following?
It’s important for people to be organic and authentic, and not to share information with the hope of increasing their followers. If they share information with their followers, their followers will then organically share the information with their own followers. There is no fast track to building audience on social media with respect to chronic health conditions, but there are tactics you can use, such as when to share information on social media. You want to make sure the content you share is interesting to your followers so they engage and share it.
Sometimes it’s funny to see some of the content that has gone viral. One time, I had a video that literally took five minutes to make and that video has been seen on Facebook by like 50,000 people. Oh my god! It was just something I threw together about using makeup if you were living with HIV, and how that is something that can make you feel better. My messaging was pretty simple: If you feel something like that that makes you feel better, just do it. It’s not that you are not trying to be who you are, or trying to mask your identity. It’s like someone with cancer, if they wear a wig after losing their hair, it’s not that they’re trying to hide their head, but that the wig makes them feel better. I did a video on my phone and posted it, and that is one of my most watched videos on that platform.
If you feel something like that that makes you feel better, just do it.
I think you have to listen to yourself as an advocate for those kinds of moments that pop in. That one was a real-life moment, not something that was scripted or that I could preplan. I just thought while I was doing concealer that morning in the bathroom, “My goodness how many other people either want to do this or have thought about it but are scared other people will make fun of them like I was?” So I just tried to do a video that spoke to that on the personal topic, and I’m glad I did. There are other videos I have planned for weeks and weeks and nobody watched!
