Poz Perceptions

HIV infection rates in young gay men are rising, but what it means to have and be aware of the disease has changed. Six men share their stories of love, loss, sex, drugs, family and the role HIV has played in these areas of their lives.

This project is about perceptions and experiences surrounding the disease that 20 years ago shook the world – HIV. It's about how attitudes have shifted and how different groups' understanding of the disease has shaped our culture.

After years of research and development of new medications, people are living longer and fuller lives with HIV. But the rate of infection is not going down.

not going down: New infections in young men were up 22 percent from 2008–2010.

In fact, in the young gay and bisexual male population, the rate has been steadily increasing. Additionally, studies show that young gay and bisexual men are now twice as likely to have never been tested for the disease.

more than twice as likely: 44 percent of young gay men 18-35 never been tested.
21 percent of gay men 35 and older have never been tested. (Kasier Family Foundation)

We sat down with six men – five in Chicago, one in New York; some HIV positive, some HIV negative; of varying ages – to understand the roles HIV has played in their lives.

For John and others that lived through the epidemic, HIV was a death sentence that took away loved ones and entire phonebooks of friends.

"In my generation you knew it and you thought about it. Eventually you knew somebody that would die from it and it would be in your face," John explained. "You would see the sores on them and you would see them losing their hair. You would see them selling their life insurance policies because they only had six months left to live."

For some younger men like Eddie, the disease is simply a risk to be considered when negotiating sex.

"If I were to be infected it would not be the end of my world," Eddie said.

To Hadeis it's an infection that can be easily managed with a package of pills. For others like activist Jim and PrEP educator Damon, it's a cause to be tackled with treatment options to be explored.

Pre-exposure prophylaxis drug (PrEP): A drug for people exposed to HIV through sex or injection drug use. It stops the virus from turning into a permanent infection, and is 92 percent effective at preventing HIV contraction.

The perspectives these men shared with us were deeply personal, tied to their own stories of love, loss, fear, doubts, sex, drugs and family. They are stories that can't be summed up or trended out. For that reason, their stories are presented here in the truest form – in each man's own words.


Choose a story.


John R.*


John has lived with the fear of "gay cancer" since he was a teenager. On a Wednesday night out at Chicago's famous gay institution Big Chicks, John fell in love with a wide-eyed, gregarious, HIV-positive man named David.

April 29, 1992. Big Chicks Chicago.


I literally sat there staring at him walk in, walk past me, walk to the bar order a drink. And I started angling at him. And this is not me. I'm not aggressive like that. But I found myself angling towards him. David was standing there at the bar having a drink with his friend Molly and I stand beside him, trying to nose my way in.

We were talking and I was like, "So you want me to take you home?" Because we were connecting, we were really connecting in a big way. And he looked at me and was like, "I'll let you take me home if you can tell me my middle name." And I was like, "Hmmm, what do I say here, how do I make this happen? I don't know, is it Howard?" … David's story was told in his eyes. You would just look at him and he was so expressive. And his eyes got huge. He was like, "That's right. That's my middle name." Then he pulled out his license and showed me. I don't really believe in fate or signs but that, that was a sign to me.

"David was HIV positive, which he told me right away. But when we met it was love at first sight for both of us. It was an amazing thing … "

My time with David was really when my life opened up. Because he truly was the love of my life and that changes everything in your life. It changes who you are as a person. It's this amazing time of discovery and you start to see the future and you see how your life is about to get really great.

But a lot of his friends were also HIV positive. I'm negative still to this day. But during that time, we were together for 10 years, I probably watched five people die either directly from AIDS or some sort of complications. David, David died from complications …

He always told me it would kill him if he made me HIV positive. It put a strain on our relationship. Once [my first test] came back negative obviously we were very relieved, but we had a very serious conversation with each other and I said, "I will be with you till the end. Whoever's end comes first … But we have to support each other and we have to support each other's health and that means that you have to support mine too. So if I do seroconvert, then we just have to talk about what that means because I'm not going to go anywhere."

Seroconvert: The immune process of developing antibodies to HIV. After antibodies appear in the blood, a person will become HIV positive.

We lived in Avondale in a two flat. The house was on Whipple Street and Addison. His parents lived in the apartment below us. David and I lived upstairs. We had a dog, Charlie. He was a Brittany Spaniel. We would have an open house every Christmas Eve. Their whole family would come, and they would be downstairs, and all our friends would come, and they would be upstairs. So it was just a house full of people on Christmas Eve. It was just fun.

I haven't celebrated Christmas since he died. Because I just can't do it any more because it's just too sad. It still makes me sad. He died on December 29th, he had his aneurism on the 18th. I spent Christmas Eve in the hospital. It was terrible. Those 10 days were maybe the worst 10 days of my life …


David had a genetic mutation that created a third artery in his frontal cortex. The steroidal medication he was taking at the time for his disease was slowly eroding the walls of the artery. In 2002, he suffered a massive aneurism.


He worked at Swedish Covenant Hospital. It actually happened at work. It was just so weird how it happened. I remember I kissed him goodbye and I left for work.

It was December and it was cold. I was in a cab and I was riding to the hospital. I remember sitting in the cab like this (looking off into the distance, his hand supporting his chin, his fingers draped across his lips) and thinking, "This is it. Maybe it's not it. No, something happened and this is it." I got to the hospital and I knew everybody there. I knew right where to go and exactly who to talk to. They brought me into the room where he was and I just fainted. I became hysterical and I fainted …

I just remember waking up on that floor after I fainted and the ER nurse was looking at me like, "John, you have to pull it together." And I remember thinking, "Why do I have to pull it together? Why? Why did I have to get tested for HIV every six months? Why did I have to be afraid my whole life? Why do I have to do this? Why do I have to do everything?" The first word that came out of my mouth was, "Why." And that's when she got into, "Because you're the only one who can." That's what stuck with me. That's what got me through, because it was the worst that ever happened to me.

"There's nothing worse than meeting the person that is your soul mate and then they die. It wasn't even 10 years yet. He was 39."

The year immediately following that I would just come home and cry. It's all I did. Every day. For a year. I remember I would be in one of the crying jives and thinking, "Are you ever going to stop doing this?” But I couldn't stop.

There was a day that I got through the entire day and realized I hadn't [cried] I remember falling asleep and I realized I had made it a couple of days now where I didn't cry at all. And I remember feeling a little guilty about it. It was something I had been doing for a year. Was I done mourning now? Is that what that means? I was just done with that part of it. The mourning process took a long time. It took years … He's still with me today. He'll never leave me.


Several years after David died, John started dating again.


I dated a lot of young guys. A lot of them wanted to have unprotected sex and this was back in 2003, 2004. It wasn't where it is today. It was better, but we didn't have PrEP then. You always had condoms with you. That was never even a question. It just was something that you did.

There was a kid that I met online. He was 25 at the time. He was specifically looking for somebody to fuck him without a condom, and he actively pursued me. I wanted to meet him because I wanted to talk him out of it.

The more that we had this conversation about, "I just want to try," the more it became clear that he didn't just want to try it.

"He was participating in this risky behavior because it was a thrill for him, it got him excited."

It was something that he wanted to do because it was dangerous. I didn't sleep with him because I just couldn't do it. It felt gross to me. And I don't think I could have because I was so turned off by that sort of unwillingness to see what he was doing to himself or what could potentially happen to him …

It made me think about all my friends who died and it made me think about David. It made me think about living with HIV, living with this specter of HIV in your life and just how draining it was, and how terrifying it was. And how you live in fear all the time if you're negative, and if you're positive you're not living in fear anymore you're just living with this disease. It really just made me sad.


*The names in this story have been changed to respect John's privacy


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Eddie Gamboa


Eddie is a 25-year-old graduate student at Northwestern University in Evanston, Illinois and he takes PrEP. He thinks contracting HIV is a risk people have the choice to take.


The first time I had sex with a condom was with a guy that I just hooked up with. I was 21 at the time. We met on Grindr and it was really the first time I had met someone on Grindr and decided to meet up with them. He was insistent that we use a condom, partly because he was older than I was.

Grindr: An all-male location-based social networking app geared towards gay, bisexual and bi-curious men.

"For him using a condom wasn't a choice, it was something that you had to do to protect yourself, and for me it was a choice."

At the same time I was in a class called the Rhetoric of HIV and AIDS that was all about the history of HIV, the history of safer sex campaigns, all of this sort of thing. I still remember the moment where he pulled out a condom and started to put it on and I felt like the entire class was watching me. I felt like the class was in my hotel room judging me for the decisions I was making, judging me for the way that I was engaging in this sexual practice and also judging me for the ways the condom went on. I had the overwhelming sense of dread that I was doing this wrong.

When it was over and I had time to think about it, I was like, "I was afraid for nothing." It was just a decision I was making to use a condom this time. It wasn't something that I had to imbue with a radical political decision, like, "Oh, I'm stopping the spread of AIDS with this act."

Since then, I have viewed a lot of my sexual decisions as just that, as choices I am making. So my decision to go on PrEP was a decision that I made so that I could mediate certain factors in my life.

One of the reasons I'm on PrEP is because my partner is HIV positive. And sure, while he is on medications that decrease the chances that he will infect me, I decided to go on PrEP just so that I know that I have some reassurances on my side of the table as well. You have to negotiate what are the risks involved every time we have sex. …

"When I found out he was HIV positive, it didn't shake me at all."

It just meant that we had to have a discussion about the way that we were having sex, and we had to have a discussion about what we were going to do to ensure that I wasn't infected, because that was a goal for the both of us – that we could minimize the risk as much as possible.

It's not the only goal that we have when we have sex. A lot of that comes down from him. He knows what being HIV positive is like and he doesn't want me to go through those same experiences. As someone who is not HIV positive, I'm going to trust someone who is to tell me that I don't want to do that. If he says, even with all the medication, even with all the information it's still not any fun. But at the same time, and I have been really honest with him about this.

"If I were to be infected it would not be the end of my world."

While it remains a goal, it's not like the ultimate prize where we get to the finish line of our life and we're like, "Well I stayed negative this whole time" (he pumps his fist). Because I understand the risks involved. I also understand that, first of all, I'm in a very privileged position here that provided me with health insurance that even if I were infected, I would be taken care of, that I can live easy in the knowledge that I live in the time that these pills, though expensive, are available to me. So it's a goal of ours but it's not an indicator of the success of our sex lives. It might be for him. He is definitely of the belief that if I remain negative we have done something right. But for me it isn't like that.

I'm not saying that I'm looking to be infected, but if I was infected, my whole life wouldn't come crashing down around me, which is a very comforting thought because I know that if I lived 20 years ago I would not be able to say something like that. …

People often say we're not afraid of HIV and it's something that is really frustrating to me. I don't think HIV is at the forefront of people's minds in the same way that it was at the apex of the epidemic in the United States.

apex of the epidemic: 50,876 Americans died of HIV in 1995. This was the largest death toll during the epidemic in the 1980s and 90s. (HIV/AIDS Surveillance Report Vol. 13, No. 2)

And part of that is because we don't see people dying in the same way that they were in the 80s and early 90s, it's just different. We have categorized HIV as a condition that you can live with for a very long time … Wasn't this the goal of the 80s – for us to be less afraid of HIV? For us to have the kind of sex that we wanted to have?


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Damon Jacobs


iPrEX: A 2007 clinical study run by the National Institute of Allergy and Infectious Diseases testing the efficacy of PrEP before it was released to the public.

Damon is a HIV educator and family therapist in New York City. His life changed four years ago when early reports from iPrEX showed that a new drug would be 92 percent effective at preventing HIV, while previous had only showed 44 percent efficacy.


It was June 2011. I was in the 7th floor conference center of Gay Men's Health Conference, GMHC, at a large community forum where there would be researchers and more science that was going to be presented about iPrEx following the initial understanding. What the further analysis revealed in the next six months after the initial results were published was the difference between the 44 percent number and the 92 percent number. So I was literally sitting there, in this room, and I believe Ken Mayer was the one who said that participants who took it consistently (meaning four or more times a week), that there was really 92 percent …

Ken Mayer: Dr. Ken Mayer is a professor at Harvard Medical School and advocate for LGBT medical needs.

I swear, I looked up and to me it was like did he … it was like a firework just went off. Like, did he really just say 92 percent? Could that be possible? For the first time in my adult life, could there be a way to prevent HIV that was that effective?

"Could there be a way that I could stay HIV negative and enjoy my greater levels of intimacy and connection and sensuality with another person, which I had never known in my adult life without the fear of HIV?"

So yeah, that was a pretty big deal, and I was like, "I want this, I want to get my hands on it."


On July 19, 2011, Damon started taking PrEP.


It was kind of scary because I didn't know what the side effects could be. I wasn't worried my hair was going to fall out, but I didn't know if I would have some of the more common side effects, such as nausea, diarrhea, abdominal cramping, headaches. Would I be facing those? And if I did, would they be intolerable?

I had none of those side effects at any time. I thought this was a really interesting concept but I wasn't quite so sold on how well it would work. The research was so new and the data was so new … But I also felt surprised that it felt kind of empowering. It felt like every day that I take this blue pill that I was doing something proactive and responsible and empowering to prevent HIV.

"I mean, it really felt like after all these years of living in fear that it would come to an end because of this little blue pill."

Damon initially kept his PrEP use private and focused his advocacy for vaccines and condoms. It wasn't until an encounter with a friend that his perspective changed.


When I was doing the vaccine research here in New York and teaching condoms and vaccines only, I got a lot of support from the drag community here. Some of the performers would even give me time on the stage.

vaccine research: Research to develop a vaccine to prevent the HIV or a vaccine to halt development of the virus.

But in 2013, unfortunately the vaccine trials ended. There was no efficacy found at all. I lost my job. And the last week of my work I was really bummed about this. I was walking from my work on 7th Avenue in New York City and one of the drag queens who had shared the stage with me, in boy drag not in drag-drag came up to me and was like, "Damon, how's it going? How's the research?"

I said to him, "Well it's actually not going very well. Unfortunately the research trials are over … But at least until then we have PrEP. I have now been on it for almost two years. It has just been a game changer for me and at least until we have a vaccine or a cure we have this."

And my friend just looked at me. His face … . He was like, "Why didn't you tell me? I just became positive three months ago and I didn't know there was a pill that could have prevented that and I didn't know insurance would have paid for that pill. Why didn't you tell me that?"

And I'm telling you that was one of the worst moments for me, because here I am trying to be this do-gooder, educator, therapist, activist, researcher guy and I had all this information about PrEP but I didn't tell him about it because it wasn't my job … But he was right. And I got really upset after that and then I got really angry. I was like,

"Fuck it, that's it. That's the last time someone can legitimately call me on that."

That is why I started the group on Facebook and I am on there every day, literally, because I don't want a single day to go by that I could be rightfully accused of not trying, not trying to get the word out."


Today Damon runs the PrEP Fact: Rethinking HIV Prevention page on Facebook. With more than 6,400 members, it serves as a forum to ask questions, present problems and learn about the medication.


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Jim Pickett


Jim has built a career on HIV prevention advocacy at the Aids Foundation of Chicago. He wants to create a "toolbox" of preventative technologies for the disease he has suffered from for 20 years. The latest drug on his radar is PrEP.


I had been tracking new prevention technology research since the late 90s. Most of my focus, or a lot of my focus, has been around microbicides. And then somewhere in the early 2000s, PrEP came on my radar.

microbicides: A possible treatment where a compound is applied to the vagina or rectum to prevent contracting of HIV during sexual intercourse.

I looked at it very skeptically, like this was another way for pharma companies to have customers, and I was skeptical and I was cynical about it. It was before I understood what was really happening with PrEP research. So instead of just being cynical and kind of pissed off about this technology, I started to learn about it and started to read about the science and the studies. Then I changed my opinion and I thought, "This is a really valid option and I hope it's successful."

I thought, "Well, I should look into this and if I care about new prevention technologies, and I'm excited about microbicides, I shouldn't be blinded by my love for the idea of microbicides." All advocates should be focused on things that work. So whether they're your pet things, your favorite things, the things you've really focused on, if something comes out of the pipeline that works, we have to get behind it …


Jim is passionate about prevention because of his own personal experiences during the AIDS epidemic.


I came out in 1984. The AIDS crisis was just coming down hard, it was scary as hell to be a sexually active young person.

"Every HIV test was a grueling, horrible experience. Every single time."

It was scary. And you did see people get sick and die, all the time. Constantly the gay papers all had very full obituary sections. We don't see that now.

Then it was just, you wouldn't see someone for six months, then the next thing you would know, there's a notice for their memorial. And that was our life. So, my god, something that would've taken away some of that fear and anxiety, and more importantly, saved us, saved so many people. I mean so many people died, it was a war, it was destruction. Thank god we have something now.


But working to improve the public's opinion of PrEP and prevention has not been an easy task.


It has been challenging, you know, this is paradigm-shifting, this is upending almost 30 years of what we've talked about in terms of how to prevent HIV.

When for the longest time your notion of what safer sex is was wearing a condom, and now we're saying, well, it's wearing a condom but it could also be taking a pill. That's huge. And it was bigger than any of us really expected … So that has taken some untangling. That's untangling from every level. From policies and procedures to community beliefs, to really challenging our comfort zone.

We've done trainings and events where people are very deadset against PrEP. Not so much anymore, but a couple years ago people were very deadset against it and did not want to hear anything about science.

"Their reaction was, "No, no I don't want to hear about it, it doesn't work, it's bad.""

And had a million reasons for why it was bad and would say things like, "Oh, insurance isn't going to cover it,” and this and that, and these were falsehoods. Insurance does cover it, Medicaid does cover it. But there were people who were so upset about it.

A couple years ago, I would get trolled. People would start calling me names, start saying things; "Were you an expert 20 years ago when you became infected? Obviously not. What do you know?" And then they would say I'm shilling, that I'm just doing this to line Gilead's pockets. They would look on AFC's website and see that oh, lo and behold, Gilead is one of our funders … No one is shilling for anybody; we do work that we believe in. There were these ideas that, "Well, me and people like me, positive people who have been pushing for PrEP, we're only pushing for this because we have more people we can bareback with" … So [they were saying] I'm doing this so I can have more people to have sex with without condoms, which is as kuku bananas as it gets.


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Hadeis Safi


Hadeis works with HIV testing at the Center on Halsted and bartends in Lakeview. He tested HIV positive three years ago after repeatedly having unprotected sex but did not see the virus as a death sentence. He uses his sense of humor to manage the status.


I didn't do the smartest things when it came to sex. I didn't use protection very often, if at all. I had had sex with somebody where I felt like the risk was pretty high, and [I had] the "fuck flu." October the year before, I had gotten really, really sick. It was flu-like symptoms and I knew it was the fuck flu because of the timeline of things. It wasn't until a year again until I got the balls to go and actually get the test.

fuck flu: A slang term for a period of time after having unprotected sex and contracting HIV where people feel intensely sick and experience flu-like symptoms.


November 29th, 2012, 6:30 p.m. A week after Thanksgiving.


I had just stopped dating somebody who I really liked. I was really hesitant to actually be physical with him. We dated for a very, very short period of time, but,

"I knew. I knew I had seroconverted, I just hadn't gotten the test yet."

This guy and I had broken up a few days before. I Google'd nearby clinics. I walked in at 6 o'clock. It was dark, the sun was down already. I remember being like, "Okay, let's go, this is it. No turning back now, I know what's going to come of this, I know what's going to happen. I just have to go now. I can't wait anymore."

I went in, I sat down with the [tester] and I remember being like, "It's going to come back positive, so let's get on with it."

"Well, you don't know that."

"No, no, I do. Let's just do the thing."

I don't know if he was new or if he was just nervous, but he was not really good at what he did. We sat down and he took the finger-prick.

I remember being like, "Oh god, just hurry up. Get on with it. Let me get my results and move on with my day."

Twenty minutes pass. "Alright, the test is done, so we're going to take a look at it now.” He looks at the test and he pauses for a second and turns to me.

"Right, so, um – " he looks at the test again. I was like, "Go ahead and fucking say that it's positive so we can move on."

"So your test came back positive … "

And I was like, "Cool. Can I go now?" I didn't want to be there. I knew – I had known for probably over a year at that point, I had known I had seroconverted. But I finally heard it and I wanted to go and be alone.

The director of the program was there, so he came in and talked to me. "How are you? How are you doing?"

"Well, I have HIV, so … I'm as okay as can be. Can I go smoke now? I just want to have a cigarette." That's all I wanted to do.

They were going over the procedural stuff they had to do, and I understood that and I let them do their thing, but the entire time I remember being like, "Can I go smoke now? Can I go smoke now? Are we done yet?"

They did the final finger-prick test and took my blood. It was 7:30 at night, almost 8 o'clock, and I remember they were finally like, "Okay we're going to call you two weeks from now when the confirmatory tests come back."

"Okay, can I go smoke now?"

They said fine, so I went to my car and pulled out my cigarette. I grabbed my phone, I was like, "Do I call … ?" I always had people I was close to, but I was like, "I can't do that to them right now. It's a month before Christmas. I don't give a flying fuck about Christmas, but it's a big, happy holiday for them. Alright, I'll leave this alone."

So I went home and lost myself in the Internet. I started playing on Twitter and watching music videos and doing anything to keep my mind off of it. Nothing was successful, but I remember trying not to think about it because I couldn't talk to anybody about it yet. I wasn't ready to make somebody else deal with that kind of knowledge. I was very alone in the process.

I had a couple breakdowns a few weeks later. Some guy randomly attacked me on Twitter. (The man said Hadeis's friend had HIV and that he was a whore.) I interjected, saying, "Don't go around saying shit like that." I remember going in to defend my friend and that guy posted that I had AIDS. At that point, I had just found out three weeks before and I lost it. I remember texting my friend who that was happening with, and I was like, "I need to talk to you right now because this is too much for me."

That was the first time I said it to somebody else. It was intense for me.


After that day, Hadeis took several weeks to come to terms with his status.


I like to stay on the positive side of things. Because I had logically understood that everything was going to be okay,

"I didn't let myself feel any of the emotions that people should let themselves feel when they get life changing news."

Regardless of the fact that I can live a normal to near-normal life, [testing positive is] still a life-changing thing. There were a couple times where it was so overwhelming. Realizing the little things that were going to have to change would just come pouring out of me. I would be like, "Oh my god, all of this is different now."

I take my pill every day at 5 p.m. I have to stop whatever I'm doing and my alarm goes off so I can take my pills. I have to put everything on hold sometimes because I can't miss my dosages. You're going to carry your medicine with you everywhere you go, every day of your life. You may have to have five or six alarms set so you're going to have turn those off every day for the rest of your life.


Despite these changes, Hadeis describes himself as "HIV-positive-positive." He does not allow his status to jeopardize his personality or sense of humor. For him, cracking jokes is the best way to manage his status.


I met a friend's boyfriend a month ago. It was a whole bunch of us and it was the first time we were meeting our friend's new boyfriend. The host of the party mentioned being on PrEP and made a joke like, "Oh, I have some PrEP in my bag if you need it."

"Oh y'all talking about PrEP? I have some in my bag too, except I call it "too late.""

I poke fun at all different parts of my identities because there's no point in taking myself too seriously. That's just my mindset. If I'm going to manage it, I'm going to manage it in my way.


Hadeis has received support from his friends. But he hasn't told all of his loved ones about his status, including most of his family.


I'm first generation. When my parents found out I was gay, they were like, "You're going to get AIDS, you're going to die, blah blah blah … " They're not going to understand it. Ever. So I haven't had that conversation [about HIV] with them yet because they don't need to know. I manage my health perfectly fine. All it's going to do is cause them unnecessary stress and concern about my death, which is not around the corner.


When it comes to sex, Hadeis has faced many different reactions to his status, ranging from rejection to fetishization. A couple of years ago, Hadeis encountered a bug chaser.

bug chaser: A person who wants to contract HIV and is negative who searches for relationships with positive people.


There was a person who I had that conversation [about being HIV positive] with. He was like, "Okay, cool, same." This guy and I ended up having sex and a month and a half later, he goes, "Oh by the way, I definitely got [HIV] from you!"

"What?"

"Yeah, I lied, I was negative. I was trying to get HIV, so I told you I was positive so you would fuck me."

"Are you fucking kidding me?! I wouldn't have done that had I known that this was not already a reality for you."

I was really angry and really upset. He put me in this really uncomfortable position. This guy straight-up lied to me about his serostatus and used me, literally used me, to convert himself.

That was a really fucking weird experience. There's nothing I could have done more in that situation. I gave someone else HIV. Holy fucking shit. He could just be lying. He could be fucking with me. He's never come back and sued me or press assault charges; he was super excited. Whether I gave it to him or he actually got it himself, I don't know. I haven't talked to him since the day he sent me that message."


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Phil Cordes


Phil Cordes is a 27-year-old gay man who grew up in a conservative, religious family in Ohio. He is negative but has been exposed to HIV firsthand. His experiences have shaped his consciousness of HIV/ AIDS and believes it needs to be an open conversation in safe spaces today.


It was all something that was other. People with HIV were other. I didn't know anyone who was HIV positive. I didn't know any stories. I didn't know anything. And then after I graduated college, this is where I first had my exposure to people who were positive.

I went to South Africa for a year and I was working with refugee clients at a nonprofit in Durbin, South Africa. It was there I had men, women, one gay client in the entire year from Uganda, who was fleeing persecution that was happening to LGBTQ folks in Uganda, but I had a lot of mothers and even children who were HIV positive because there's a 40 percent infection rate in South Africa.

So that's when I had my first exposure to that.


Growing up, Phil had suspicions about his older brother who was gay and lived in New York City. Phil had an instinct that his brother was positive but had not discussed it with him. Two months, ago Phil sat down with his brother and brought up the question of his status.


I was visiting my family in Ohio and it was a suspicion I had held, I had wondered. So he and I had this long chat over coffee about a multitude of other things and at the end I said to him, "I have to be very sensitive in how I ask this question, but it's something I've been thinking about and I wondered. I don't want to approach you in a way that I'm making assumptions about who you are,

"But could you clarify for me what your status is in regards to HIV?""

And he thought for a second and he goes, "Well, I am positive."

He said, "I've been talking to my friend and I've wanted to tell you for a while but I also didn't want to throw that on you."

It was a great conversation and really sharing vulnerably, and it told me about the relationship he was in when this happened and he gave me older brother wisdom.

I said, "I don't think anything differently of you and I'm really glad you shared."

I think it was important for me to say, "I don't see you as any different." I think, also, he thought about telling me when I first came out several years ago, and I think he would have shared that with me. Then I would have held a lot of the same cultural stereotypes that I had from my upbringing. He's not even sure he'll share with my sister. He eventually will, he promised he eventually would, but he will never share with my parents. It's just something he's not going to broach a conversation about.

"He doesn't want concern; he doesn't want pity. He also doesn't want to be told, "We told you so.""

And based off my parent's assumptions of what it means to be gay, it's a sin and it's wrong and it isn't healthy, so it kind of proves their point. They almost see HIV as a kind of punishment in a way, so it reinforces a lot of the stereotypes they are holding on to.

I think he doesn't want to share because of that and he also has his own places of shame and insecurity that he carries with him. We all do that. And part of that is knowing who are safe people to share things with and where do you make an effort to be vulnerable and where do you say, "Even if I try to be vulnerable and even if I am honest with this person, they're not going to receive it." It's like trying to talk to someone who's deaf and blind. It's not possible unless you have the ability to connect with them and the modes of communication they can access. For people who are like my parents, of the Baby Boomer generation, they don't know how to connect to that in a conversation.


A few weeks ago, Phil was tested for the first time. He had been in a long-term relationship and was not nervous about his status but got tested to practice healthy regular check ups. He told his friends about his experience but was met with shock at his candidness.


I don't think it's something that's in the consciousness of people in my age group to be honest. I had a two-year relationship that just ended back in February and that was my only sexual partner I've ever had, and when I had this conversation with my brother just a short while ago, actually, he made promise that I would get tested every three to four months, just to make it a healthy practice going forward in my life, no matter what.

I went and got tested for the very first time a week ago and I wasn't worried at all and everything was clear to go but what was interesting, I went to an event that evening, it's called "The Welcome Committee,; it's a group of LGBTQ folks who get together and they try to make safe spaces for gay and lesbian people to meet.

So we were at a bar in the West Loop, I shared with them the fact that I had gotten tested and my friend, Kevin, turned to me and he says, "Phil, that's really amazing that you have the ability to declare that to people because not many people are willing to share the fact that they were tested."

These are things we have to be able to talk about and bring into our consciousness.


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