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Immune & Autoimmune Diseases Q&As

HIV or Not, He’s Still Josh

Josh Robbins' own diagnosis launched him on a path of activism that has made him a vital voice in the HIV+ community.

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!

 

Mental Health

Raising Children When You Have ADHD

Does having ADHD yourself affect the way you parent your own kids? Author Timothy Denevi had first-hand knowledge with both.

Diagnosed with ADHD when he was six years old, Timothy Denevi was the kid who couldn’t sit still, who spoke out of turn in class, who was humiliated by teachers who didn’t have the training or temperament to manage his issues constructively. He saw therapists and once threatened to kill himself in front of his mother after being put on Ritalin. Yet underneath all the madness was a sweet, vulnerable boy with an unusually high degree of self-awareness who was struggling to gain control over his life.

Denevi chronicles that fight in Hyper, a moving and thoughtful memoir that tells parallel stories of his own personal experience of ADHD alongside a clear but critical exploration of the medical history of ADHD, and the psychological theories, drug treatments, mistaken beliefs and advances surrounding it.

The kid who was ejected repeatedly from his third-grade classroom and made to sit by himself in the hallway is now a 39-year-old assistant professor at George Mason University. Married and the father of an 11-year-old son and a 4-year-old daughter, he is also the author of Freak Kingdom, a recently-published book on Hunter Thompson. We wondered about the legacy of ADHD on his life and how it influenced his role as a parent.

What form does your ADHD take now as an adult?

Probably a form of restlessness and difficulty with a sense of consequences and boundaries [or] the best way to estimate the effort I should put out and the time I should allot to do so. Like, pushing myself too hard at a sport or pushing myself too hard at writing.

What are some consequences these days of that restlessness or putting too much energy into a sport? What’s the effect on you?

With a sport, it’s fine, because as long as I don’t get hurt while I’m doing it, it tends to burn off the restlessness. [Other times,] it can throw me out of whack, like either trying to complete or finish a work of art I’m struggling with or by overreacting to and having a tough time planning out my work schedule at the university I teach at. I just [went through] a situation where for almost every instant of the day I felt overwhelmed and at the end of my abilities to be able to achieve all the different tasks I had to, because of poor planning and of overextending myself.

You’ve said that you believed that members of your family, particularly your grandfathers, struggled with ADHD-related issues. Do you see any of those traits in your own children?

I don’t see the need to burn off this excess restlessness in my children that I see in my family tree.

My son is a sweet boy. Like anyone his age, he can get distracted. He can play a video game for like 12 hours. I think he’s a normal kid. My daughter—she’s [more like me]. She’s like many of the women in my family. Her personality is very vibrant. She’s brilliant, but she is very fierce and determined and willful and exuberant. I think there’s a chance she may have some conflict because of her personality within the strictures of school, but it’s hard to say. Sixth grade was a nightmare for me, but my son is halfway through it and he’s doing great. My daughter is brilliant. She’s different than I ever was, she can sit and color a full book. She did blocks the other day. I always had to be active. I would make, like, sports games. My son is not like that. My son likes video games or he just likes to chill out. So I don’t see the overactivity. I don’t see the need to burn off this excess restlessness in my children that I see in my family tree.

You wrote a candid and revealing essay for Time magazine called “ADHD in Adulthood: To Prepare for a New Baby, I Had to Prepare My Mental Health.” You said that you thought ADHD was part of your past, but that understanding changed when your first child was born. How so?

You want to serve yourself in terms of rhythm and you’re afraid that people around you will suffer. It was a really hard time when my daughter was born. I had a new job. I was suddenly working more than I ever had. I didn’t have time to write. My wife was busier. We suddenly were strapped financially because we just bought a house, which was lovely but was difficult. It’s finally only gotten better in the last six months because my daughter’s over four years old now, we can just talk and engage, where she would just scream in the past and I would get really upset by that. I’d never been so overwhelmed as I was these past four years, working as much as I was, having a job that I didn’t understand that I’d be so busy and having that take away from my writing time.

You’re afraid that people around you will suffer.

Yet you took on another book project on Hunter Thompson. How did you manage all your responsibilities without super stressing out?

To finish the Thompson book from November 15 to March 15 of last year, I put myself on a nighttime schedule. I woke up at 5 PM and worked until 10 AM and went back to sleep. It was good because I saw the family from 5 to 7 in the evening and saw the family from 7 to 9 in the morning, but I didn’t see anybody else. I was close with them, but it was a way to avoid email distraction and politics and Internet distraction. I didn’t think I was going to make the deadline, and I was glad when I got it done.

To finish Freak Kingdom while managing his family and ADHD, Denevi had to put himself on a night schedule for six months.

After taking a deep dive in your life in Hyper and trying to make sense of your early years, how did that knowledge influence you as a parent or the way that you parent?

You start to see yourself as older versions of your children.

It helped with my son Jack. I think I was aware at the moment during which you stop seeing younger children or even 18-year-olds that you’re teaching as younger versions of yourself, but you start to see yourself as older versions of your children. And that gave me a lot more empathy toward students that I was interacting with. My son and I have a very nice relationship. [Because my wife traveled so much for her job, I spent a lot of time alone with Jack after he was born.] I spend a lot of time with [my daughter now], but I have to go to Virginia three days a week to teach, so I don’t have that luxury of time I had with my son. I have to manage things better.

In Hyper, you write about the time you were on Ritalin and threatened to kill yourself in front of your mother with a butter knife. You go on to write: “How would you respond if your own son, in the midst of taking a stimulant for hyperactivity, told you he was going to kill himself?” As a parent yourself now, how would YOU answer that question?

I would just try to do whatever I could to be there for them. The brain is often at its worst when the child is between 11 and 18 or between 9 and 20. Those are difficult times. The brain is the most complicated thing we’ve ever studied. The problem with the brain is that the variables are as many as the atoms in the universe. What’s fascinating when writing about ADHD is to see doctors really struggle to understand how to interact with these young men and women who are having such a tough time. There’s no right answer.

Whether they inherited his ADHD or not, Timothy Denevi just wants to parent his kids with understanding.

For parents who don’t have children with ADHD, what should they know about parents who are raising a child with ADHD?

The behavior is variable. Just because someone comes over to your house and has a tough time and might cause a scene or might be difficult doesn’t mean that that’s the version of the child that always exists. I think it’s pretty easy if you don’t have kids to be like, “Oh, your child is the child who can’t sit still,” when in fact it’s all about environment. There are moments when a child who is deeply overactive can be very still and engaged in a way that would surprise those parents.

It always gets better. It really does.

What advice would you give to parents of a child with ADHD-related issues?

It always gets better. It really does. The effort that’s put out by the parents will pay off exponentially down the line. If you’re a parent who can minimize the conflict that comes from ADHD in order to help your child through the conflict or to get perspective on the conflict, that’s the best way. Here’s a parent that the child knows will always be there and is not going away. I think that’s the best thing because it’s going to get better later.