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Articles tagged with: personal stories of people living with HIV

Apr23

Newly living with HIV, Josh Robbins is "Still Josh" -- and still an advocate: part three

Tuesday, 23 April 2013 Categories // Activism, Gay Men, Youth, Newly Diagnosed, Health, Treatment, Living with HIV, Population Specific , Revolving Door, Guest Authors

The third and final part of an interview with young AIDS activist Josh Robbins who famously captured receiving his positive tests results on a tape published on YouTube.

 Newly living with HIV, Josh Robbins is

This article from This Positive Life by Warren Tong first appeared on TheBody.com here.

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!

Find Josh Robbins on Social Media

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Check out Josh's blog at imstilljosh.com!

Apr23

I am tired all the time.

Tuesday, 23 April 2013 Written by // Jack Frost Categories // Health, Jack Frost, Travel, Lifestyle, Living with HIV

Jack Frost is trying to figure out the fatigue that plagues him – and then going on vacation!

I am tired all the time.

I am tired all the time.

I thought that I would be back to my normal self, now that I know I have severe asthma. I make sure to take my inhaler twice a day every day and .fifteen minutes before any physical activity  I’ve noticed my breathing is much better. 

I thought maybe I was tired because I was getting used to being back at work full time after my medical leave. I have been back full time for a few weeks now and I am still tired all the time. I get home from work and always need to take a nap. Last night I fell asleep at 5 pm, woke up at 10:30 pm, ate and fell back asleep around midnight or one. 

The last year I have been to so many doctors appointments and to the hospital so many times I don’t want to go anymore. I am frustrated, I still get numbness on the side of my face, and my hands still seize up on me for no reason. I guess I am just destined to be tired all the time. 

Maybe it’s the HIV? But then again, my CD4 cells are at their highest, my last test they were around 840 I believe. When I was first diagnosed three years ago, they were 450. Sigh, I don’t know, hopefully one day I will figure it out. 

I do think some of the being tired comes from being stressed out at work. A couple of weeks ago, my co-worker that worked in the Accounts Payable mailroom with me was fired for no showing. They aren’t replacing her,  so now it’s just me, so everyday is extremely busy. Also they have been doing layoffs across the company, so everyday I am anxious I might be laid off. But even before the lay offs and my co-worker being fired I was still always so tired. If I do get let go I won’t be leaving with out my Tassimo! I joked with my co-worker if I get laid off, I will setup my Tassimo in the parking lot and start my own coffee business. I will undersell the cafeteria haha. The coffee in the cafeteria is horrific. 

I’ve been continuing to go to yoga. I love it; it’s such a great class. The yoga instructor is great, very engaging, and it’s always a great workout. (You know it’s been a good workout when you go to get up off the toilet and your legs tremble.) I have been going to yoga for about a month now, and I noticed I am slowly starting to get better and stronger. I was doing a headstand and was actually able to come off the wall and hold it for about ten seconds. Then I pretended to crash into my friend and gave her a heart attack. (I’m so evil.) The other day I was flat ironing my hair – that’s right I flat iron my hair! My arms were in the air and all of a sudden my bicep popped up. I was like ooh hello Mr. Bicep where did you come from, you sexy beast. Thank you yoga! Now if I could just eat healthy all the time. Damn you Dairy Queen, I love your chicken strips and onion rings! Yummy in my tummy! 

In other news, I am going to California for vacation.  I leave on April 29th, we are going for eight nights! I am so excited! I haven’t been on a real vacation in a few years. In 2009 my friends and I went to Laguna Beach and L.A. The first night in Laguna Beach we were so excited we ate chips for dinner and drank way too much. I was so drunk, I kept going around saying “I’m soooooo happy, I’m soooo content right now.” Then I fell down the stairs and laughed because I was bleeding. I woke up with the worst hangover of my life. I wanted to die. But then I felt better by dinner and started drinking again – sorry liver! Hopefully I have learnt my lesson and will remember to eat a hearty meal this time. We are going to Palm Springs for four nights, Laguna Beach for two nights and then L.A for two nights.  Californiaaaaaaaaaaaaaa here I come!

Editor's note: Fatigue is not uncommon amongst people living with HIV. The causes can be difficult to pin down. But this article form CATIE is a good starting place.

Apr19

Us and them

Friday, 19 April 2013 Written by // Guest Authors - Revolving Door Categories // Activism, Gay Men, Living with HIV, Population Specific , Revolving Door, Guest Authors

Guest Jason McDonald advocates for those with HIV. But, he says, the thing that drives him most is the part of him that wants to fight for others, those who are HIV-negative.

Us and them

Being an HIV advocate means straddling two different, diametrically opposed worlds.  Engaging in battle on two fronts, much like a war, I advocate for both HIV+ (us) and HIV- people (them).  Each battle has it's own challenges and rewards, some of them immediate but most of them are unknown or more long-term in the rewards. 

It is sometimes hard to juggle two hats - fighting for those with HIV and fighting for those who do not have HIV.  Both groups of people have their separate challenges.  

People who perceive themselves to be HIV-negative (one in five do not know they have HIV) often believe they are not at risk for HIV.  HIV is something from the 80’s, they say.  I can just take a pill and be fine, they say.  I am not someone who could get HIV, they say.  But all of these assumptions are false, based on ignorance or they chose to keep their head in the sand.  HIV is something that happens to “those people” (you can fill in the blank here with gay, sex worker, drug addict, homeless person, etc.) and they go to extreme mental limits to make sure nobody thinks they are one of “those people”.  Ignorance is only bliss until you get HIV, then... 

...then you become one of “us”.  All of a sudden all of your assumptions go out the door.  You are pulled roughly and violently into the world of HIV, your head no longer in the sand.  Like a grim rebirth, at the moment of your diagnosis you become someone else.  Your soul is laid bare, your very self begins to crumble in upon itself, and microscopically you begin to become repaired, each new particle of yourself knitting itself into a new Phoenix.  It may take years to rise up from the ashes of your old self.  It may happen immediately for the few and for the determined and for the strong.  

When you as an “us” becomes the new “us”, you become what was known to your former self as “them”.  And a funny thing happens...one day you realize the barrier you erected between “you” and “them”, though it is a very tall and very thick wall...that wall is composed of sand.  Being diagnosed with HIV is a huge tsunami, impossible to ignore, definitive in its power to transform. 

Advocating for myself as a person with HIV means I want to ensure I am safe, protected, and that I can always get my medications.  I definitely see the need for eliminating HIV criminalization, expanding access to lifesaving medications, and for reducing the still-awful stigma of this virus.   Becoming someone with HIV has added whole new dimensions to my life that were not there before, words such as “disability”, “Ryan White”, “adherence”, and “deductible”.  I suddenly pay very close attention to the fine print of any insurance plans I am able to choose from at work.  For me, I always look to see what kind of prescription coverage is offered, as that is my absolute main concern.  At one place I worked at for years, our HR decided to change insurance companies.  My monthly out of pocket expense for my meds shot up from $100 to $400 a month.  I paid more for my medicine than I did for my rent.  Needless to say, I had to go back on Ryan White to afford them, which always makes me feel guilty because there is a waiting list for ADAP in most states. 

Part of me finds it so much easier to fight on the side of those with HIV.  It seems easier to me to fight for more funding for HIV, to help people newly diagnosed just feels like more of a good deed.  It is definitely more appreciated.  I get more immediate satisfaction by being a resource for the newly infected. 

But the other part of me, the part that drives me the most, is the part of me that wants to fight for others, “them”...those who do not have HIV.  I want to do everything possible, shouting from the rooftops at the ignorance and complacency that causes HIV infections to rise every year.  I want more than anything for people to stop doing the things that are dangerous.  I want those who still have a choice to have the options available to them to be able to make a choice.  I guess you could very well call me an advocate for HIV negativity. 

Advocating on behalf of those who perceive themselves to be HIV- always feels like I am alone in a stadium, shouting loudly to the empty seats.  People who think they are HIV- close up when you say “HIV”.  The word conjures up the image of sex, gay or straight.  It conjures up images of needles stuck in someone’s arm.  It conjures up images of starving African children with their famine-swollen stomachs and their skeletal faces.  It forces someone to come face-to-face with mortality, another subject to be studiously avoided at all costs.  

The silence of the HIV-, especially in gay males, is deafening.  It is much easier for someone to convince themself they are not one of “those” people than it is to admit to themselves how many times they had unprotected sex last year.  But if you mention HIV to them, like a key unlocking a door, they remember that night they had sex without a condom...but wait, “he told me he was clean, so I don’t have to worry about THAT time”...or that other time...or that other time.  Like the emperor and his new clothes, they convince themselves they too are fine, nothing to worry about, now stop talking to me about HIV. Let’s talk about Lady Gaga instead.  

This is an edited version of an article originally appeared on Jason’s own blog, Embracing Pozitivity, here.  

About the author: I am 38, gay male from Knoxville, TN who is not ashamed of my HIV+ status. I am optimism personified. I am strength realized. I am just me. 

Website: embacingpozitivity.blogspot.com.Twitter @jjemcdonald

Apr19

From the Dead Sea to the dead weather

Friday, 19 April 2013 Written by // Brian Finch - Founder Categories // Legal, Living with HIV, Brian Finch

Brain Finch reports in following his trip to Israel

From the Dead Sea to the dead weather

It’s taken me a long two weeks to get back on my feet post-Israel trip. Since then it’s been cold and rainy here, so it’s beginning to feel like all that sunny freedom from SADS has disappeared…(Technically it’s SAD, but it just doesn’t seem right unless I make sad plural.)

Just last Saturday I sent a message to a friend living in St. Martin for the winter. I was at my wit’s end, in "just get me the fuck out of here" mode.  But after Margaret Thatcher’s death I gave mother nature a bit of a break. She’s merely trying to detox herself from the shock of Thatcher’s body returning to earth. Even she doesn’t want her back, it seems.

Today there is some sun, and suddenly the veil of fogginess and fatigue begins to lift. This is why I start planning getting away a year in advance. For me it’s no longer about glamour, it’s about survival. Had I been around for March I either would have jumped off my balcony and/or killed someone. No doubt that person I’d kill would be a TTC passenger taking up two seats with his or her backpack during rush hour.

It was a great trip. The guy I was shtumping turned out to be an over aged gay hipster artist who lives in the moment and has no real attachments. That translates into having a great time when together, forgotten about when not, and tells me he doesn’t believe in long distance communication when I said I’ll give you my email and stay in touch.  After he said that I never saw him again. I wanted to get to know people so that when I return I’d know people.

I did make this objective of getting to know others there. I call this my introductory trip to Israel. There will be many more to come. Historically, I’ve picked a city and made it kind of my second home. When I lived in Winnipeg, I did that in Toronto. I had so many meetings out there (pre-internet days) and a social network that one day it became impossible to have to return to Winnipeg.

Both Amsterdam and New York were “second homes” for me. During my stay in Tel Aviv I knew that this was now becoming my second home. This time with a twist, that this is the homeland of spiritual ancestries, and a tribal connection to the land and people.

This month was a time for reflection. The past year I had let go to the foundations of what I need in life. I became so determined to do stand up that I’d become sick this last winter and part of the summer. I’d get up maybe four days in a row and then get knocked down with something. In fact right before leaving I got sick and had to cancel about three gigs. I’m so tired of getting smacked down all the time. I need my health.

That means focusing on storytelling performance and putting together the one hour long solo show that I’ve thought about for the last few years. I’ll still do some stand up but only when I have things I really want to try out.

In Israel there were times when I longed for the interpersonal connections I have at home. It was a Dorothy moment. If I just click my heels three times I have it all right in front of me, even in Tel Aviv.

The third part is my Judaism. There is this essence to the community, culture, language and another kind of connectedness.

Lastly, I need to get back to the gym. Nothing like seeing so many hot guys to get one motivated to getting back into some form of shape and introduce plain old-fashioned cardio in an internet-induced sedentary lifestyle.

For the one hour show, I want to be able to workshop it at The Flying Beaver by late fall or early winter of next year.  Eventually I’d like to do this solo show in Tel Aviv (very long term goal) as there will be some topics in there not talked about so openly in Israeli gay society.

Provided I can pull a couple various elements together for returning to Tel Avi, I’d like to return for three months. I’d also bring Hildy with me.

 My friend asked my last time, “I want to hear about all the hot guys you did!” I replied, “I’m not going to talk numbers (I only diddled 3 guys but we’ll keep that between us) but I did receive over 70 messages in my Atraf profile, the local sex site. 

Apr17

HIV disclosure kind of sucks, but it’s ethical

Wednesday, 17 April 2013 Written by // Josh Kruger Categories // Dating, Josh Kruger, Gay Men, Health, Sexual Health, Lifestyle, Living with HIV, Opinion Pieces, Population Specific , Sex and Sexuality

Josh Kruger: "the longer I’ve been HIV+, the more traditional and, admittedly, boring I have become in relation to my sex and dating.”

HIV disclosure kind of sucks, but it’s ethical

When I first was diagnosed as HIV+, I remember being thankful for all the infrastructure in place to help me ensure that I wasn’t going to die of AIDS.  Whether it was through Philadelphia’s AIDS Activities Coordination Office or my initial visits to Philadelphia FIGHT, I received a care and attention that, just a decade or two ago, would be considered remarkable.  And, thanks to scientific advancements by pharmaceutical companies like Gilead, in part because of the United States government’s tardy, but right, confrontation of HIV/AIDS, my life expectancy is around 70, and I experience mild, if any, side effects.  Even more gratifying is the fact that these side effects have seemingly subsided now that I’ve been on medication for several months and am, happily, undetectable.  This means that, so long as I keep taking my once-a-day single pill Complera, there exists no measurable amount of HIV in my bloodstream, that I am, effectively, neutered from passing on HIV to anyone else, even if I have bareback sex, and that HIV cannot hurt me, generally. 

At the time of my diagnosis, though, I remember thinking, “Now, how am I supposed to have sex?” 

Notwithstanding all the tools, helpful professionals, and worthy mission-driven organizations here in Philadelphia, I was still at a loss as to how, exactly, I was supposed to navigate the gay sex and dating world in modern, iPhone hook up app based society.  In fact, I effectively tabled this personal discussion I was having with myself in favor of overtly sexual, overtly bareback, and thus only HIV+ majority population, sexual situations.  For example, there was a solid year where I would only go to bathhouses and sex parties for sexual gratification; after all, in an environment where everyone is barebacking, where everyone is specifically there to have sex, and where everyone, like it or not, has implicitly offered their informed consent to engage in these behaviors by their very participation in these behaviors, there is no need to say, “Excuse me, sir, but before you put your condomless penis into my anus, I’d like to show you my most recent results from Labcorp in Raritan, NJ, which detail that my CD4 count is a little low but that my HIV viral load is undetectable.”

Frankly, personal health matters are of little relevance or concern in overtly sexual, and bareback, environments, and anyone who claims anything to the contrary either doesn’t participate in these activities, and as such has no stakeholdership in the discussion, or they are complete and utter hypocrites (reformed pigs who hilariously take a “Do as I say, not as I have done” attitude in relation to HIV prevention, and who often make a living offering bad advice that won’t be used by anyone, I’m looking at you.  Many of you are HIV+ for a reason, and it isn’t because you had conservative sexual tastes.)

Even so, the longer I’ve been HIV+, the more traditional and, admittedly, boring I have become in relation to my sex and dating.  After all, at the end of the day, you can have all the piggish fun you want in a sling, but nobody who happens by your room at the bathhouse is going to want to cuddle or make dinner for you.  That isn’t to say these behaviors are bad; in fact, I routinely affirm that these exploits in bathhouses and sex parties are natural, fun, and, if done for the right reasons, perfectly healthy.  Yet, I still grapple with the best way to figure out how to easily normalize my relations with monogamy, dating, and more traditional concepts of coupling with my HIV status.  This tightrope walk of being honest with potential sex partners and boyfriends while still casting a net wide enough to actually engage in sex and dating is one that, I think, a great many of us who are HIV+ table, like I did, in favour of situations where we don’t even have to address it (like bathhouses.)  And, when we do try to be open, honest, and informative with our sex and dating partners, the results are, quite often, disheartening.

For instance, recently, I got a man’s number in a local gay bar.  We flirted relentlessly, and we both were obviously sexually attracted to each other.  So, just as our later text conversation started delving into matters that were the standard precursor to engaging in naked time together, I disclosed my HIV status.  His reaction was, at least in my insecure HIV focused insecurity based mind, predictable.  Feigning ambivalence, he, nonetheless, tellingly grew rather cool in the previously hot rapid fire text messaging conversation.  Then, he stopped messaging me altogether.  And, finally, in an attempt to salvage his politeness, said that he was tired.

Now, as I stated, I could entirely be infusing my own preconceived insecurities onto this man who very may well have been tired and entirely fine with my HIV status.  Or, as is the case with a large enough number of potential partners for me to write about it today, situations of which I have literally scores of conversation screenshots that I could chronicle in annoying detail here, he got spooked at the my mentioning of HIV and, in order to play the part of accepting, open-minded progressive, he feigned ambivalence, ran for the hills, and blamed being tired for our 180 away from having sex.  This approach, if that’s the case, while well-meaning, is annoying and compounds the difficulty those of us living with HIV already face in relation to sex and dating.  Frankly, I would much rather someone say, “Ick, gay plague,” and dismiss me summarily rather than “Oh that’s fine *oh god please no*, I’m okay with it *oh god can you get it from kissing?*”  After all, time is a premium for those of us facing death if we don’t continue to have wide, and free, access to antiretroviral medication.

This type of experience, of trying to do the right thing in disclosing and receiving little, if any, benefit to disclosing reinforces my, unfortunately relationship limiting and hostile-to-cuddling, default attraction to overtly sexual, overtly bareback outlets through which to meet men and have sex.

 Make no mistake, I am not complaining about this reality, nor am I demanding that the world do something.  Instead, I’m simply politely suggesting that we should be a little more candid with each other; I truly would never want to put anyone in a position where they were tolerating having sex with me under the ridiculous notion that they had to prove their compassionate bona fides.  Conversely, I would hope that others wouldn’t want to put me in a position where I see little benefit to disclosing my HIV status or where others blatantly lie about their status in order to have sex.  This latter group is rampant, based only my anecdotal and admittedly unscientific, personal knowledge, and while I agree with these men in that there is no statistically significant or scientifically probable chance of their transmitting HIV to sexual partners, and thus the idea of HIV status is, essentially, moot, I still cannot very well reconcile my own demands of candor and honesty along with finding sex partners and dates under false, and disrespectful, premises.

Then again, the guys who don’t talk about HIV whatsoever are also the ones who are, seemingly, having a lot more sex than I am.  So, what do I know?

This article originally appeared on Josh’s own blog here. 

Apr16

Newly living with HIV, Josh Robbins Is "Still Josh" -- and still an advocate: part two

Tuesday, 16 April 2013 Categories // Activism, Gay Men, Youth, Newly Diagnosed, Health, Treatment, Living with HIV, Population Specific , Revolving Door, Guest Authors

The second part of an interview with young AIDS activist Josh Robbins who famously captured receiving his positive tests results on a tape published on YouTube

Newly living with HIV, Josh Robbins Is

This article from This Positive Life by Warren Tong first appeared on TheBody.com here.

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.

To be continued . . . 

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