March 25, 2013
Josh Robbins was already an HIV advocate in Nashville, Tenn., when he was himself diagnosed with HIV in January 2012. He'd supported local HIV organizations' events as a small-business owner, and was even part of an HIV vaccine study. Then a brief unprotected sexual encounter put him on the other side of his advocacy activities. "I needed some of those services that Nashville CARES has provided, that I have supported for years but never thought I would use," Josh recalls. Because he was in a vaccine study beforehand, he's been in HIV care practically since the day he became positive -- and he's been open about his HIV status for almost as long, even videotaping his diagnosis appointment for YouTube. "I don't think that what I'm doing, or what I've done and what I'll continue to do, is brave," he says; "But if it helps one person or two people here feel like they're OK, then that's enough." In this interview, Josh opens up about disclosure, stigma, growing up gay in the U.S. South -- and befriending the man from whom he acquired HIV.
Josh, welcome to This Positive Life.
Well, thank you. I've been looking forward to it.
Can you start by describing how you found out you were HIV positive?
Yeah, absolutely. I had unprotected sex on December 18, 2011. We started with a condom and then the condom came off. I really didn't think that we were going to really continue, or go back into anal intercourse. And then things got hot and heavy again. So we had unprotected sex for about five minutes. And that's not a stretch. I mean, it was really just, like, five minutes.
He didn't get off, actually. There was a knock on my door, so we had to end it quickly. One of my really good friends stopped by and needed to talk. He had some things going on. And so it was kind of an end-it-and-that's-it. So that was on December the 18th.
I really didn't honestly think a whole lot about it.
And then on Jan. 2, 2012, I started getting really sick, kind of like the flu-like symptoms that they talk about. I had a fever, chills, just didn't feel good. I really just thought I had the flu. So the next day on the 3rd I went to one of those doctor-in-the-box type things, one of those urgent cares. They thought that I just had some kind of flu-like thing going on. They didn't know what it was; they just gave me some cough medicine for my throat, because my throat was really hurting.
I came home. Still felt terrible. And the next morning I woke up and had, like, 30 sores in my mouth. Again, I wasn't thinking about HIV at all. I kind of got mad, and I called my mom and my sister. And my mom and sister both worked at hospitals, my mom as an RN. They immediately thought that I obviously just had an allergic reaction to whatever the medicine was.
I went back to the doctor two days after that. The doctor came in and looked at everything, and reviewed his notes. He left the room and he came back in with a nurse and he said, "We need to talk about your high-risk behavior." And it kind of hit me right then. In my gut, I knew that it was HIV.
They wanted to test me there but they couldn't, because I'd been involved in an HIV vaccine study here in Nashville. I was very active in our community, as far as talking about prevention. But I was still kind of oblivious to it. I told them that I couldn't get tested at that office, which they didn't take too kindly to, because they really wanted to test me for that.
I had to call the HIV vaccine program because I was a volunteer and I could only be tested there. I had to go in. And then, from going in to the vaccine study program, till I finally got the results, which was January 24, that was like three weeks or so. So I actually found out from the medical professionals at the hospital that I'd been doing the vaccine trial with.
It sounds like you were practicing safer sex that entire time, and this was a slip-up.
Yeah, I think that it was. I mean, there had been other times that I trusted someone, or asked them their status, and I knew them. What I'd been really focused on in 2011, specifically because of the vaccine program, was not allowing my trust in someone and me judging their character to be the factor of whether I wanted to have protected or unprotected sex with them. That was something that I was working on in 2011. And so with him, it was a slip-up.
How old were you at the time?
Well, my birthday was January 12, so in the middle of feeling sick and doing my first test, and then my second test, and then my third test with my vaccine program, my birthday was dead in the center. So I was 28 at first and then halfway through that three-week process I had my 29th birthday.
You filmed yourself getting the test; is that right?
Yeah. That week after I came back from the doctor-in-a-box that said I was showing symptoms of acute HIV syndrome -- it was on a Friday -- I couldn't get into the vaccine program to meet with them until Monday. So I was sick, not feeling good, and on top of that, I knew in my gut that I had contracted HIV.
During that two-and-a-half to three-week process of me finally getting what the final result was of this test, I started writing and videoing just little things, how I felt at the moment. The reason why I did that was because I didn't want to forget it. I didn't want to forget how I felt. In the unlikely case that I got out lucky, and it was just the flu, or something, I wanted to remember what I felt like then, and how everything kind of flashed before me.
When I went in on the 24th, when I got my final result of being positive, I did video. And then when I went in the actual room, I just audio-recorded it. And the reason why I did that was simply because I didn't want to forget what they said. If it was a positive result, number one: At that time I didn't know one person that had ever told me that they were HIV positive. Number two: I also knew that as soon as they said that I was HIV positive that I would forget anything else they said. And so I did it for that purpose -- so that I could listen back to what they said; but also because I wanted to hear those words again.
A couple weeks after I got that result and I hadn't really told anybody, then I went back and listened. And I heard how powerful it was from an outsider's perspective. So I decided to put it online in a little short video clip on YouTube.
When they told you that you were positive, what did you think, and how did you feel?
The staff and the medical professionals at the Vanderbilt HIV vaccine study are so caring and so honest and gracious. One of the guys that's kind of over the program that I'm in was prepping me; and we really had an open dialogue. I told him that my gut said that I had been infected. During that three-week process, he started going down the road of, well, what does this mean? He started talking to me about viral loads and CD4 counts. Then I started doing a lot of research, because I had no idea what he was talking about.
When I walked in on the 24th to get the results . . . again, I knew in my gut what the result would be. What I was surprised about was the viral load. I don't know. For some reason, in my mind, 175,000 is what I expected. Now that I know what I know, it's just funny that I even thought that. But 175,000 was what I expected. So when he said that I had a positive viral load, he followed that sentence up with that my viral load was at 5.5 million. That was a shock for me. It was a real big shock.
What was the first thing that you did to help you come to terms with your diagnosis?
I had already made a decision. I'm really close with my family. I have a mom, a stepdad, my father, and my stepmom. And then I have a sister and two stepbrothers. But I've known them my whole life and so they're like my brothers. My family as a whole has been through a lot in the past couple years. My dad had a seizure, almost died. My sister had carbon monoxide poisoning on a trip. She almost died. One of my stepbrothers had a motorcycle accident, and he died twice; and they brought him back to life. And my mom has MS [multiple sclerosis]. With all that's happened with my family, we've gotten really close. We've always told each other that if there was ever any kind of news or anything that we needed to tell each other, that we would do it immediately, and that we wouldn't hold the information.
Before I went to get my results, I purchased a plane ticket to go home that night. I knew that if it was positive, then I don't know that I would have gone and bought a ticket. I would have been scared, and that sort of thing. So I kind of just started my day and then, you know, bought a ticket; then went and got my results; then came home and got my bags; and then I went to the airport. I immediately flew home.
And so the day that I found out, I told my mom and my stepdad. My sister picked me up from the airport. And then I drove down and woke my dad and stepmom up -- they were asleep -- and shared the news with them, as well. So immediately, within 24 hours, I had a support group, which was my family, the people that I'm the closest with.
The next day, I flew back home in the morning; and I went to work the next day. Probably the hardest call, on top of telling my family, is that I knew that -- because I was negative via a blood test on November 30, 2011; then I had unprotected sex December 18, and then I was sick January 2, 2012 -- so I knew timeline-wise exactly who the person was. And I knew that they didn't know that they were positive. And so that was a very difficult call. But I did that call within 24 hours of finding out, too. Because I wanted to get it out of the way.
What was that conversation like?
It was a difficult conversation. First, I texted him to see where he was and if he could chat. To be completely transparent, it wasn't somebody that I was extremely good friends with. It was someone that I had a bunch of drinks with -- it was a one-night stand kind of thing. I was just glad that I had his phone number, to be honest. This may make me sound terrible, but that is being real.
So I texted him and said, "I need to chat with you. Call me." And he called me immediately and said, "What's going on?"
I said that I'd just found out that I was HIV positive and, based on my timeline, that I really, really, really strongly encouraged him to go get tested. And he actually put the words in my mouth. He said, "Because I'm the only one that you could have gotten it from?"
And I said, "Yeah."
There was a pause there. He didn't really even know where to go. So I helped him and got him in touch with the people at Nashville CARES to test him. I introduced him to those people and then, when he found out that he was positive, helped him know what to do next, where to turn and that sort of thing. He was going through the process of meeting with people, trying to find a doctor and that sort of thing; it was a process that I just went through a couple weeks before him, so I was able to kind of lead him in that direction.
We are friends now, and we chat all the time. He is not open at all about his status, which is completely his choice. And I've honored that. And so I haven't disclosed who he is to anyone, either. [Editor's note: The man who exposed Josh to HIV, who is now a friend, wrote a blog entry about getting the call from Josh that led to his own diagnosis -- read this story from his perspective.]
It's still very gracious of you to help him. It sounds like there was no resentment at all on your part.
The day that I made the call to him, it was because I asked one of my friends, Vic, who works with Nashville CARES: "What do I have to do now? Do I have to call that person, or will the Health Department just call him?" For me that was like an easy out. I'll just let them do it.
And Vic said to me, "Yeah, they will. However, that takes a lot of time. And if he doesn't know that he's positive right now and he has unprotected sex or any risky behavior during that time, are you going to be OK knowing that that could be happening?" And that's the reason why I made the immediate call: Because I hadn't infected anyone and I know that he didn't intentionally infect me. But I wanted him not to put anyone else at risk, without knowing his status and that sort of thing.
And I'm glad I did, you know? It wasn't until the last week of May 2012 that the Health Department here in Nashville finally called me. They asked who I had sex with, or whatever. But it took them four months to call. So if I hadn't made that call to him immediately then he would just now be finding out. And if his viral load was high, you know -- I didn't know at the time -- or his CD4 count was really low, not only did I want him to know so that he wouldn't expose anyone else, but I wanted him to get to a doctor so that he would be better equipped to be successful against this disease long-term.
And so, as a whole, I told my family and a couple of my best friends, and the person that I had unprotected sex with. I made all those calls immediately.
Everyone's different. Obviously, now, because I have a blog, imstilljosh.com, and I was on the cover of one of the national publications here, telling my story, I'm very open about it now. But I also understand that that is not for everybody. I'm in a position and a place in my life where I could be open, and I wanted to. But there are other people that are HIV positive and maybe only their doctor knows. And that's OK.
It definitely takes time for a lot of other people. It sounds like you were ready to open up immediately.
Yeah, it was pretty immediate. I'm somebody that finds humor in weird things, you know? Sometimes when I go to funerals, the whole thought of somebody being passed away, and laying in a casket, and people walking by . . . I guess I'm just weird, but I kind of find humor in different things like that -- or I can see humor in it.
So I was sitting in my house and was thinking, how in the world am I going to tell everyone? Or, what happens if they find out before I tell them? Or, if I told a couple people and then everyone else kind of starts trickling to find out? Again, I still didn't know anyone that had ever told me that they were HIV positive.
So I did a test thing on my Facebook and social media. I don't even know why I did it -- but I posted an Elton John song, Philadelphia Freedom. Because the only thing that I put with HIV was Magic Johnson and the movie Philadelphia. And so for some reason there was like a little comfort in there, a little humor; I don't know.
And then a couple days after I did that, I decided to make a blog and tell my story. Because Nashville's a city, but it also feels very small at times. And in the gay community, everyone knows everyone. I wanted to be in control of that dialogue, and my story. So I created a blog on Thursday morning. And that Thursday, at 4 p.m., the best way that I knew to let everyone know is, I just posted the blog address on my Facebook. That first day, you know, I think I had like 600 friends or something; the blog was viewed almost 1,300 times. So the secret got out real quick.
From there, the gay publication in Nashville asked me if they could tell my story, or write about it. And I said, "Absolutely." Where I am now, it's twofold: Number one, it's to raise awareness; it's for people like me that have found out, that they're HIV positive, and they felt alone. They didn't know anyone. It's not something that anyone seems to ever talk about -- or did, at that moment, to me. Number two, I'm trying to tackle the stigma of HIV, that it's not a death sentence, obviously, as we all know. But in the South, particularly, there's still a very strong stigma around it.
So I wanted to stand up and yell in town that I had HIV, that I'm OK, that I'm going to survive, and that I'm still Josh. Kind of the motto behind my little blog is: I'm still Josh; you still be you. As long as you still do you guys, then I'm still going to be me. And we just have this disease now that I'm just dealing with.
How do you start the conversation with somebody when you're disclosing to them?
Well, for me, it's actually been pretty easy. Because I don't know if I copped out. I mean, I posted it on Facebook, and I have a blog. The blog is now at almost 15,000 views. Then being on the cover of the magazine here, locally. Everyone here, as far as the gays in town, they're all aware. I guess some of them are probably tired of me talking about it.
But there's other things that I had to think about. I have a company and I have a staff, and we have interns and that sort of thing. And so I've made it a decision again -- it's not my legal responsibility -- but I made a decision that I was disclosing to everyone.
You know all the pink stuff, the marketing for breast cancer awareness? Susan G. Komen for the Cure? People walk around and they say stuff like, "I'm a survivor of cancer." Or, my mom -- I've done MS Walks with her. And it's very easy for her to tell people that she has MS. I see it real similar, that it's just a disease that I'm fighting. There's no cure yet, and there's no vaccine that works 100 percent yet. So I'm just on a journey, just like other people; but it just happens to be that what I'm fighting is HIV.
It is so important to me for people, and particularly -- and that's where my heart is -- ifor Nashville, because this is my home; I've lived here for 10 years. So it's so important for other people that have HIV that in any way feel like they're scared or feel less or whatever. I want them to know that they're still the same person, that they're OK, and it's going to be fine. So that is really the bottom line on all of it.
The benefit for me, with the way that I disclosed, and that I've told everyone and I've told them so quickly was that I haven't gone to the bar or to the club or whatever here, and knew that people were talking about me, about something that they haven't heard from me about. So I don't feel uncomfortable going out now. And I'm sure there are people that are going to say things. But I've tried to be honest and I've tried to be transparent.
And some people have called me brave, which I don't think at all. I don't think that what I'm doing, or what I've done and what I'll continue to do, is brave. But if it helps one person or two people here feel like they're OK, then that's enough.
A good example of that is I got a call, a couple of weeks after I released the blog, from someone -- and I couldn't even tell you who it is now -- but they called me. It was a 22-year-old here in my city that had just found out a couple days before they called me that they were HIV positive. And they contemplated committing suicide because of it. And they happened to see someone reposting my blog on Facebook and they read it. Then they felt compelled to call me.
From there, I talked to him for just a few minutes. And he said that because of the blog he decided to tell at least one of his friends, or a couple of his friends. So now he's fine, you know? He didn't commit suicide.
I don't think that I had anything to do with that, except that I know that's what people feel, or that's what people have told me that they have felt immediately. And so if my being able to talk openly about how I contracted it, and what I'm going through, and how I feel, and all those things, if that helps other people then it's worth it to me. Because I'm in a position where I can, you know? I have a strong support group around me. My family means the world to me, and they're OK.
I don't think you give yourself enough credit. It sounds like you saved that boy's life. Would you say that's the best response you've gotten from sharing your status?
It's funny, but I have been flooded with different stories of people. And so some of the best responses to me are people that have been living with this disease for 15 years or 20 years, and they come and say, "Thank you. I haven't been in a position where I could really talk about it like you, but thank you. It makes me feel a little bit more normal at least." Just as a whole, that's the stuff that feels good.
But there have also been a couple of bad things. I got a really nasty e-mail from a previous pastor. He told me everything that he thought about why I got the disease, and how I'm living with it, and all that stuff.
Then, you know, there's thedirty.com, which is a funny website. Somebody posted something not pretty about me on there, basically saying that I'm trying to get fame from this, or monetize this. And that's not the case at all. I haven't made any money from talking about my status, and I wouldn't.
But all that is to say that there's good and bad, but the great things have far outweighed any negative that could ever come at me.
What did your youth pastor say to you, and how did you react?
Basically what happened is that I released the blog, and then the pastor saw the blog and sent me a very long email, basically saying that it's unfortunate that I contracted the disease, that he saw the disease as a direct result of me living a sinful lifestyle from my sexuality, and that God really wants to love me, and so I need to repent and turn away from all of this stuff. Just a religious rant. But the hard part for the email was that it was really tied in with some things that were very personal to me that he really used as weapons -- the fact that I had been molested as a kid, and the fact that the pastor's oldest brother passed away from HIV, and that sort of thing.
He was trying to do exactly what he thought was right, which was to email me and tell me that I'm wrong and that I'm sinful. Although I disagree, adamantly, with every theology that he discusses in the email that he sent to me, I really truly believe that his heart was in a place where he thought he was doing the right thing. So I don't hate him or despise him, but I did respond to him via a blog.
I basically just told him that HIV was not a result of God being angry at me, and that eventually I would be in heaven and that I'm OK.
I did rebuke him a little bit, in a nice way. I told him that this was the absolutely wrong email to ever send to someone that's recently infected, and especially someone that's recently infected and then trying to talk about it in hopes of decreasing stigma and also furthering the discussion of prevention in others. This is totally the wrong tone. And so I responded in that way. But I haven't directly spoken or had a conversation at all with that pastor. And I don't really want to.
He sent me the email but I responded to him in the only way that I knew how at the moment, which was via my blog. But I did disguise his identity so hopefully he hasn't gotten any hate mail, or anything.
But, you know, it was totally the absolutely wrong thing to ever say to someone, particularly someone that's recently infected.
Let's talk a little bit about dating and relationships. Has being positive affected your dating life or your sex life at all?
During the three weeks that I was waiting on my results, that constantly came over my mind. I was absolutely scared that I would never be loved again. I felt that maybe that the gays in my town would think that I was used goods. I had already come out of the closet about sexuality, and that had limited the people that would want to date me. And then now that I'm HIV positive I was like, wow, that even makes the pool even smaller. Because I thought that only someone that was HIV positive would even want to date someone, you know, like me. I was real nervous about that.
The other thing that was really hard is that during the middle of finding out, I had met someone that I hadn't been intimate with, but I'd seen him out several times, and was really kind of digging this guy. And the thought of having to tell him that I was positive: I just knew that he would run away. So I was kind of preparing myself for that.
I didn't actually call him and tell him that I was positive. We hadn't have sex or anything like that, and so I didn't have to tell him anything. But he is a friend of mine on a social media; and so when I released the blog on my Facebook, he saw it. And he actually called me and he said that he wanted to see me. And I said OK. We met, and he told me that it was OK.
I think the coolest thing that could ever happen for someone that is positive is if someone that is negative just wants to date them. I think that is the coolest thing, and one of the bravest things, in the middle of all this. With that said, of course dating and relationships and that kind of stuff is overwhelming. I mean, when do you disclose to someone? Do you get them to really start liking you before you tell them? Or do you tell them from the very beginning, when they have absolutely zero invested? I don't know. I think that's a question that keeps going.
Obviously, I've researched and looked online. There are tons of people that only want to hook up with someone that is DDF (or disease-and-drug-free); they would never want to date somebody that was positive. I've seen stuff online, blogs and forums where people are saying that positive people should only date positive people so it will quit happening. That was something that I was really concerned about. It was a decision that I had to make, because I didn't know how he would react, or anyone else would react. But I decided I was OK with being alone the rest of my life if I could talk, if I could tell my story, and if I could in some way decrease the stigma and then further the discussion of prevention. That was more important. And so I had to be OK with that. But it worked out really well for me. So I'm dating somebody that I've been dating for over a year now.
We've already established that on top of that, you also have a very close and supportive family. Did your relationships with them change at all after you disclosed to them?
The only thing that changed was that the first several weeks after I told them that I was positive, they wore me out with phone calls and text messages, asking how I was and how I was feeling, and that sort of thing. So it was appreciated, but I finally had to tell my family: "Listen, you don't always call me every day anyway. So you still be you, and I'm still me. We can talk; but you don't need to ask me every day how I'm feeling, and if things are OK. Because I'm fine." But besides that -- which is, obviously, appreciated -- my family really rose to the occasion and have been amazing supporters for me.
That's wonderful. Can you tell me a little bit about your background? Where did you grow up?
I grew up in West Tennessee, in a small town called Jackson. It's between Memphis and Nashville. A lot of people know Jackson for one reason, really: My hometown has gotten hit by tornadoes a lot.
It's a very small conservative town. I never hooked up or anything in my hometown; that would have been way too weird and that sort of thing.
When did you tell your family that you were gay?
I moved to New York right after high school, to go to an acting school. That was the first time that I had voluntarily had sex with a guy -- a terrible experience, by the way -- then I moved back.
I kind of dated a couple people after I moved to Nashville for college. I first told my sister, when I was around 24, that I was gay. And she was fine with it. I hadn't told my mom and stepdad, or my stepmom or my dad, yet.
So I went home one Christmas the year after I told my sister. My mom, again, has MS. We were in the bathroom, and she was getting ready or something. She asked me, "Are you dating anyone? Because I never hear you talk about anyone." And I kind of smiled, and I said, "Yes."
And she said, "OK. Well, do you want to tell me about it?" I started telling her about it. But it was very generic; but still, to me, it was obvious that it was about a guy. So I thought I had come out to my mom.
So she would call me for the next six months, and we would talk about the person that I was dating. But I didn't realize: Because of her medicine she was on, she didn't remember that conversation, and she didn't realize that I'd come out to her. And so for six months, we had talked on the phone and she would ask about whoever I was dating. But it would always be, you know, "How is your friend So-and-So?" And so I just assumed she just wanted to call him friend, which was fine. But she really thought it was a friend.
There was a day that I realized absolutely that it wasn't clear to her that I was gay. And so I had to come out to my mom a second time, which is funny.
How I came out to my dad is, I had called my stepmom. I told her. And I told her to tell Dad. An hour later he called me and asked me if I needed to tell him anything. And I said, "Nope. You probably know everything."
He said, in his Southern way -- he's a fisherman; he's a tire salesman -- the nicest thing that he could say was: "You could kill someone and I'd still welcome you into my house." Which makes other people laugh; but that's totally my dad's character. So I knew it would be OK.
But since that time my sister has come to visit; I've taken her out to the gay bars and she obviously has met who I was dating and that sort of thing. My dad and my stepmom: I convinced him to let me take them to a drag show, and to the gay bar. And they know who I'm dating, and who I've dated. My mom is the same way. It's awesome, because it's completely open.
The one thing that's cool now is that my mom sent me a text the other day saying Obama is backing gay marriage. And I was, like, "Yeah. That's really cool."
And she said, "Yeah."
And so I sent her a text message -- something like, "So, are you ready to walk your son down the aisle one day?"
And she replied back: "Absolutely." Which was just a cool text to see from my family. But, yeah. I'm completely out of the closet about my sexuality and, I guess, my status.
When did you know you were gay, yourself? And was that difficult?
It's always a funny question to think through. I remember when I was a kid, and I don't know the age -- 5 seems to be the right one to say -- but I remember playing with the neighbors, the little boy next door; I remember kissing him. And that obviously is not what other kids do.
But also, we lived in a small town. I had girlfriends, and I really liked them. But it wasn't ever where I wanted to go home and sleep with them, or anything. You know, we were just friends, I guess.
What I explained earlier about when I was younger and was molested: That was when I was older. I was, like, 10, or 11, or 12, or something like that. It was a family member. But as far as knowing I was attracted to guys, it was early on. I remember kissing that boy.
Do you want to talk about the molestation at all?
I'm really OK with it now. It was a situation where it was a family member and I was told that this is what guys do, you know, when they're older. And so when I say molested, there wasn't ever anything violent or anything like that. But I absolutely was taken advantage of as a young person. And that should not ever happen by an adult, obviously.
But in the same instance, although I've kind of blocked those circumstances a little bit, the fact was, moving forward, that I don't think that that had any influence on me being attracted to guys.
Do you know what happened to that family member?
No. I told my family and my sister, and then there was a kind of division that happened in the family because of that. Years after -- I think I was 18 when I finally told them what had happened -- there was a lot of anger. I talked everybody down. I said, "I'm really the only one that has the right to be mad, and I'm not mad. I'm fine. And that's that."
The thing is -- I don't want to give too much information -- that some families have uncles that aren't legal yet. So they may be 10 years older, or something. But it wasn't like a fully grown adult.
There was nothing else that needed to happen. I'm completely fine with it. I've forgiven him. I mean, I'm not going to go to dinner with him, probably. I don't go to extended family reunions, anyway.
Let's talk about health care and treatment. What has your health been like since your diagnosis?
January was a total wash for me. I was completely sick, and not feeling great. I finally saw a doctor on Valentine's Day. The reason why my viral load was so high at the beginning, readers may or may not know, is because I found out so soon. It's been remarkable -- and those are the words that physicians have used -- being able to really track my process and my progress, particularly because of the vaccine study. They've had my blood work and have been viewing everything when I was negative, through seroconversion, all the way through now being four or five months into being infected.
It's been interesting. I've had; every two weeks or so, I've had CD4 counts and viral loads, which is way more information that I would ever suggest anyone ever have. But that's just the way that it's worked out between doctor visits or vaccine visits. My viral load came down, and it's come down even more.
I have made the decision right now, in consultation with my HIV specialist, to not begin medication, as my viral load (at last test) was 1,102 and my CD4 count is 730, with great percentages.
It's important to understand that although I am not on medication, that I consider myself in therapy and in treatment. This discussion of being "on" therapy and "on" treatment leaves out a very attentive, concerned and responsible group of individuals -- like myself -- that, at the given moment, are not taking HIV meds.
Deciding which medication, if any, that I will choose at the exact moment that I feel is best for me, personally, is just that: a personal medication decision I will make based on my body and health, consultation with my doctor, and the current information and research that appears to apply to me. I'm not a one-type-fits-everyone kinda guy. But just because I'm not on medication, doesn't mean I am not taking this as seriously as others.
How did you find your HIV physician?
The vaccine program that I've been talking about at Vanderbilt, they're really connected with Nashville CARES. As a small business owner, I'd really supported all the events that the organization does every year; I've always been involved in that. I didn't ever think that I'd be a client.
I went over there, and they gave me a list of people; and then I just called around. And I found a doctor. It's been amazing. I think that the physician is kind, is warm, and is also very knowledgeable.
Little things: They said that there's more studies going on about just the neuroscience kind of stuff that goes on with your brain right after you get HIV. I remember during that amount of time, through January and half of February, that there were times I couldn't even remember conversations that I just had. And so there was a short-term memory kind of loss. My physician was able to talk to me about that. Because that's an area where more research is being done. She's always traveling to these conferences, and that sort of thing.
It's been awesome. I have a fantastic doctor! She's understanding, patient, informative, motivating and the best choice for me for treatment. At one of the visits -- you know, when I got to 550 -- I was really aching to discuss treatment. Based on the current numbers, I have made the personal decision not to begin medication -- however, I am also involved in a couple clinical trials that allow me to have access monthly to my viral load and CD4 numbers. Based on this participation and the volume of real-time numbers, I am comfortable making the decision to choose a path that is right for me.
But my hope is that they come out with like a once-a-week kind of pill at some point, because I'm absolutely terrible, even about taking a multivitamin every day. So I've been trying to do better. My physician has given me an exercise, to try to take a multivitamin every day at the same time. She's trying to prep me for when I have to start taking meds. But I'm just hoping that the longer that we wait, as long as my health is OK, or stable, that something new will come out.
How do you think you'll deal with adherence, once you do start treatment?
One thing that I have been real honest about, with all my physicians, is that I am a drinker. I like to have drinks when I go out a couple times a week. I've always been nervous that if I'm supposed to take a pill at 11 and I'm out till 3, whether I'm going to remember when I get home, or when that has to happen. I know there's tons of different little options, and different ways to do it.
But it's just going to be a commitment, once I'm at a position where I need to take medication. I've always been like that. I've never wanted to take any kind of medicine unless I just absolutely had to. But once I'm at that point that I'm going to have to, then it's just going to be a change of priorities. Then I'm just going to make it happen. So I'll probably use every one of those tools.
What do you do to keep healthy?
I eat healthy. I was smoking a pack of cigarettes a day. I've really cut back those. I'm not like a Nazi about it, where I won't ever have a cigarette. I'll have one if I'm out with somebody. But that was really an important discussion with my physician -- that I needed to quit smoking. So that was something that I did. And we discussed openly about me and my drinking. Then they were looking at my blood, and my liver, and making sure everything with that is fine.
Also, knowing when to say no. If I'm tired -- and there were times that, within that six-month period, I was just kind of tired, and worn out from life. Before I was infected, I would just keep going and keep going. I wouldn't really take care of myself in that way. Now I've really learned how to say no. So if I can't do something, or if I just don't feel like it, for whatever reason, then it's a no.
I know everyone says exercising is important. But I'm not someone that is ever going to go to a gym; it's just always awkward for me to go to a gym. So I'll run. Or it's little things. Like, I live on the fifth floor of my condo, and so I don't take the elevator. I do the stairs.
I don't know if that answers your question. But there's no magic thing, I guess. That's what I'm doing. And I feel good. So . . .
That's good. Little tips here and there always help.
Well, I also think that a lot of what I've gone through is mental, you know? I decided how I was going to attack this disease. I decided how I was going to tell people. And I did it on my terms. Little things used to really bother me. I'm one of those people where everything can bother me. But since January 2012 I just don't let that stuff bother me, you know? If I can't change it then I can't worry about it. So I think that's part of it, too.
I've stayed really connected with things that really encourage me. I love Steve Jobs, so I was reading his book and his quotes. Getting involved with other people online through social media, just talking to them or checking up on them, and that sort of thing -- kind of investing, virtually through the Internet, in some other people's lives, to just check up on them and see how they're doing. It kind of took the focus a little bit off me and made it more about, you know, this is a crusade for everyone that is going through this.
A large part of the reason why I feel I'm doing OK is the way that I just decided to think about things and be positive. I've always laughed when everybody says, "Stay positive," because I'm always, like "Well, I am positive." But now I just said it!
Let's talk about your work. What kind of work do you do?
I'm a talent agent. I own a talent agency in Nashville. I deal with actors and hosts, children and their parents, for television, film, commercials, music videos, print jobs, that kind of thing.
How did you become involved in HIV? You mentioned doing prevention work before your diagnosis. How did you become involved in HIV activism?
Someone doing outreach about the HIV vaccine program approached me at an event at a bar. I really wanted to do it. Before that, there was a well-known female impersonator in town that passed away, and her name was Bianca. Mark Middleton was his name, and the personality was Bianca.
But she was HIV positive and she was very, very vocal about prevention and the disease. When she passed away, I got my company involved with her memorial. Doing that really got me connected with people that were very sincere and honest and hardworking, when it came to activism and awareness. That's kind of how it started.
And then at one of those events, I saw information about the vaccine study. They said that they needed HIV-negative people that had sex with guys. And in my way, I was thinking, oh, this is so fantastic. This is my way to give back. So I got involved with the study.
From there I started doing some outreaches with them, looking for other volunteers. But I'm actually really glad that I got involved with the vaccine. I want to say this, because some people may wonder: With the HIV vaccine being studied, obviously, it's not a live virus. There's zero chance to get HIV from the vaccine. The way that I got HIV, even though I was in the vaccine study, was because I was exposed to it.
But once I got involved with that, and then Nashville CARES, and helping them raise funds and that sort of thing, I really fell in love with it. Whether people think that it's God or another power or whatever, I really think that it was orchestrated at the right time. Because I really got passionate about it at the same time that it happened to me.
I'd thought I was invincible. Other people have told me that, specifically: "Josh, we never thought this would happen to you. If it can happen to you, then it can happen to me." And that's kind of been their attitude -- which was surprising at first. But when I sat back and thought about it, it's absolutely true. I felt invincible. And so all of that year that I was involved in prevention and activism and that kind of stuff, it really prepared me to be able to tell my story and, now, raise money.
The last couple months I've been involved with some amazing fundraising people. And I'm proud. We've raised a lot of money in the past couple months for Nashville CARES.
Do you ever get sick of thinking or talking about HIV, or do you think you will?
I think I did. I went through a month in the beginning, to be honest, where every week I was doing something related to HIV or awareness or a doctor's office or something. And so in May of last year I kind of got a little tired. And so I just kind of stepped back a little bit. I didn't post any blog, and kind of stayed off Twitter, and even my Facebook.
Now, looking back at that, it was fine for me. It was a little selfish, I guess. What I'm doing is -- and what we're talking about, all of us -- is so much bigger than any individual person or any of our individual stories. We've just got to keep going and keep talking about it. Because the more we talk about it, the easier it becomes to be talked about.
What do you think are the biggest issues that need fixing in HIV today?
One, I think that HIV is not a "one disease fits all." I think there are regional things to think about. I think that people that live out West, in San Francisco, potentially deal with different issues than someone with HIV in Tennessee. I think that that needs to be approached.
After the pastor wrote me that unpleasant email, it really started making me think, why in the South are we having an epidemic, but we also have the highest number of churches? So there's a tremendous opportunity that is being missed in churches with a captive crowd, if you say, to talk about HIV or STDs [sexually transmitted diseases], or any of that. Some churches are against contraceptives or prevention, I guess. My church that I grew up in wasn't. They were OK with birth control and condoms. But they never talked about sex or disease, or any of that.
And so I think the first thing is to look regionally, maybe, at potential issues. And that's what I've been kind of looking at. I can't speak for anyone else in the country, except, you know, Nashville, or the South, really. Here, the stigma is very strong, still. And I was nervous about that.
Because we're not talking about it enough, in my opinion, in the South -- HIV and prevention and even early on in schools, besides mixed in with every other STD that you can get -- what I think that it's doing is that it's making it harder to talk about later. When I was growing up, I don't really ever remember talking about HIV or STDs, beyond the one day in health class.
And the way to combat stigma: I was sitting in a group therapy, right after I was infected. Maybe I was a little bit green, and maybe the gentlemen that were in there who have had HIV for years, maybe they were a little bit jaded. But in that group therapy that I was in we talked about stigma. And they kept bringing up stigma, that it's so terrible and hard.
And then I just asked a simple question, but it really was a little bit of an epiphany to me before I released my blog. They said the stigma was so bad. And so my follow-up was, well, what have you guys done to combat it? What have you done to fix it? And almost everyone in the room said that they hadn't told anyone that they had HIV. Again, understand some people -- maybe a majority of people -- can't disclose it. I get it. With me, I could.
What was just an epiphany to me: The only way to attack stigma is to talk about HIV, and to talk about it in its face, and show that it's OK. And so those two things, the regional thing and really just keep on talking about HIV, because by doing that, it will become a little more accepted -- not accepted that you want to get it, or that it's OK that people have HIV, but that it's not a death sentence, and that we're not the scum of the earth because we have HIV.
Could you compare how you felt about having HIV when you were first diagnosed, as opposed to now? How has it changed?
I think it has changed. Right after I found out, I was very scared of what people would think. I knew that it wasn't a death sentence and that I would get on the medicine and that though my life expectancy may be shorter than if I was negative, that I would live a long, great life. But I was scared about if someone would love me, and I was scared about what people would say about me.
Right after that, I made a decision that if someone wouldn't love me romantically because of that, that I was OK with that. And I really meant that. I would rather talk about it, about this disease, and attack the stigma, than worry if someone is going to love me, or want to be with me the rest of my life. Because I will be fine.
But coming now, several months later, I respect and I understand the disease a lot more. So my attitude toward that has changed. The thoughts that have started going through my mind now are, you know, disclosure. Why is disclosing or not a criminal act? My mind has just started going down that road. It's not something that I'm going to focus on, but it's just starting to get into the sub-issues; after you get over the big issue of having HIV, it's just how to live with it, you know? Knowing when or not to disclose, or why people choose not to.
But I'm not scared for my life like I was right after I found out that I was positive.
How do you think having HIV has changed you?
It has made relationships that I have with people, in general, more important. It's humbled me tremendously. I mean, I was a cocky bastard. Last year and before that, I was a talent agent and was cocky, and cared less about people and more about myself. This disease really humbled me. I couldn't think of anything worse than contracting HIV, before I contracted it. That was the worst thing in my mind that could happen to me, as a gay man. And then when it happened, it was very humbling.
It was humbling to know that I had to reach out to people to help me, that I needed to go to a therapist and that I needed some of those services that Nashville CARES has provided, that I have supported for years but never thought I would use. So it was humbling, in that aspect.
The other thing is that -- and I don't know if you've heard this before, or what -- but after I found out that I was HIV positive, it made my life a lot richer. Things that don't matter do not matter. Little things don't make me go crazy like they used to. Relationships mean the world to me. My family: It got me even closer to them. So in a weird way it kind of refocused my life into being better.
It's really hard to explain and put that to words, but my life is totally different, in the way that I look at people and relationships; and how I even look at myself is a lot different. I mean, it took a while for me to really be OK with looking at myself in the mirror right after I found out that I was positive. I'm OK with that now. And I feel good about myself.
What advice would you give to someone else who has just found out they are positive?
If they just found out that they're positive: One, that they are the exact same person they were the hour, the day, the year before they found out that they were positive. That they are still them. Now they just have something that is going to make them choose relationships more carefully and, really, how things are going to be valued.
The one suggestion that I would give is find at least one person that you feel that you can trust, and tell them. Don't try to do this by yourself. Whether it's a therapist, or somebody that truly loves you in this moment. Try to find at least one person to tell that you're positive.
Get online, create an anonymous Twitter account, and find other people like me that are able to talk about it, that you can communicate with, and that it's safe. If you email me anonymously then I'm going to respond. And I won't know who you are but you at least start that chat.
Read TheBody.com. Gosh, I've spent hours on the website. Learn as much as you can about HIV.
But the main thing is that you're still you and that the way that you think about yourself is as important as getting treatment for the disease.
Do you have any closing thoughts, or any takeaway messages you want to relay?
Yeah. First, thank you so much for asking me to just chat with you. Everyone knows their own personal story of the moment they found out that they were positive; and maybe they even have stories like mine, where they know the person that infected them, or that exposed them.
But what you guys are doing is simply amazing. And I know that the three weeks when I was not sure if I was positive or not, I did more research than I'd ever done about HIV. And it's websites like you guys' that I came to, and that I learned the information. And I heard other stories, and I was reading about people. And so, thank you. You know? You helped me tons.
That makes me feel very proud. Thank you for the kind words!
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This transcript has been edited for clarity.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.
Follow Warren on Twitter: @WarrenAtTheBody.