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The following is a transcript of the first podcast of ‘OUTthink’. It’s the first part of a two-part podcast.

OUTthink is now available to download or stream now from iTunes, Youtube and Podomatic.

Lawrence Akers:
Hi, and welcome to OUTthink. My name is Lawrence Akers. I am a clinical therapist, a member of the LGBTQI community, and a passionate advocate for mental health. I’m going to pass it over to my guest to introduce himself for this week.

Daniel Cordner:
Good day! My name’s Daniel Cordner. I’m a graphic designer, I’m a bike rider, I like to dig in the garden, vegetarian, I love to train handstands, and I’ve also been living with HIV for 11 years.

LA:
Thanks Danny. So living with HIV for the past 11 years — obviously it’s something that’s become a part of your life and it’s something that you’re quite comfortable with. Let’s start perhaps by going right back to the start and perhaps talking a little bit about what it was back then to be diagnosed HIV positive.

DC:
So I was diagnosed 11 years ago. HIV was a very different thing 11 years ago. So when I was first diagnosed, I was at a point in my life where I had a great job, had a great circle of friends, I felt like I was really starting to figure out who I actually was. And then one day, I went for a yearly checkup at my doctor and received my HIV diagnosis. At the time I walked out of it feeling alone, feeling scared, feeling uncertain, and feeling like I’d made the biggest mistake in my entire life with no one to turn to. So at the time, for me it was an incredibly difficult period for me to go through as it is for everyone once they receive an HIV diagnosis. At the time when I was diagnosed my doctor didn’t really provide me with any information at all. And I guess he also implied that I was an injecting drug user, gave me a phone number to call at the Alfred, and then sent me on my merry way. I guess to me I didn’t really go out on my merry way, I basically went home, locked myself in my room, and cried for the weekend until I guess I came out of that and eventually did tell someone.

But that first particular diagnosis, at that particular time, I think the doctor could have given me just a little bit more support or a little bit more information about services to tap into or actually, I guess, handed me some brochures or some information on what it’s like to be living with HIV.

LA:
You mentioned that you went back to your room and you cried for the weekend. I imagine obviously something that is as life changing as that would have had ongoing consequences or ongoing effects. How were you around your friends and around your workplace during that initial period?

DC: Around all my friends, I guess I started do — I started to close up. I wasn’t as open as what I was with them. I’ve very honest and open, and as you’ll find out today, I can talk till the cows come home. Once I received that diagnosis, I thought that was part of me that was closeting myself. And it was very similar to coming out as a gay male. I felt that there was a part of my life that I needed to hide from people. Nowadays, 11 years later, it’s a completely different scenario. But at that particular time, I was really scared. I had all sorts of fears around HIV, and I also had a lot of personal stigma attached to what it was like to be HIV positive. So, that weekend for me I guess I was really — I was questioning my future. I was questioning the decision that I’d made and the mistake that I’d made and what my future held, I guess because I was processing this all myself without anyone to talk to. I came to some very scary conclusions. I guess I almost went into probably a state of paranoia where I was concerned about the circle of friends that I was close to, that I’d possibly infected them with the virus.

It sounds ludicrous now that I think about it, but at the time I became quite paranoid about my exposure to other people and how I’d possibly put these people at risk and how I’d possibly messed up their lives. And this was just a layering and a layering. I felt it wasn’t just my life I’d messed up, but potentially many other people’s lives that I’d messed up as well.

LA:
Because the way that HIV is transmitted, there tends to be a lot of shame that’s attached to that. How did you deal with that shame in that initial period? How much of an impact did it actually have on you?

DC:
It had a pretty profound effect. For me, the greatest issue for shame for a start for me was that I retracted sexually. I didn’t have sex for quite a long period of time because it was contracted through sex I felt the best way to avoid that was not to have sex. Eleven years ago, HIV was very different in regards to medication, undetectable viral loads, and also prep. It was not even a conversation in the landscape of HIV at the time. So, I guess there was still a lot of fear even around condom usage and HIV transmission. There was just always such a risk attached to sex and HIV transmission. And for me, I chose not to have sex. I didn’t feel comfortable having sex with someone, and I didn’t want to take the risk of possibly transmitting the virus to someone as well. So I think for me, that shame meant that I retracted sexually. I didn’t have any partners for at least a 10-year period, and that was a very profound effect for me.

It took me a long time to, I guess, accept my own stigma and accept the virus, but also accept that I wasn’t going to transmit the virus on to someone that I was having safer sex, and that I wasn’t putting people’s lives at risk. But 11 years ago I didn’t understand that at all.

LA:
So obviously being able to be open about your vulnerability would be a massive step forward at that point. And I guess one of the first turning points for you would have been when you did start to share your HIV status with others. How did you decide who you should be sharing it with?

DC:
When I started to tell people it was my closest friends that I wanted to tell. Because I have such a close relationship with the people around me, I was really concerned about me starting to shut down and close down and closet a part of my life that I wasn’t having these open, honest relationships with people that I was used to. And I loved that and I treasured that so much that I didn’t want the virus to also then hinder those friendships — the honesty and openness that came with that. I have a very close circle of friends and I guess I started with some of my closest friends. Some of my closest friends, a majority of my closest friends, don’t sit within the LGBTI community. They sit within the straight community. And for me when I first started to tell people, I was very aware that I also then had to take on the role of educating people around HIV as well. I feel if I was maybe having the conversation with a bunch of gay mates they would have at least had the base knowledge of HIV, but once I first told people, I also had to explain to them that I was okay. I was still going to live. It wasn’t a death sentence anymore.

I still had all my challenges and ups and downs over this 11-year period, but I guess I chose those people on the basis that I also needed their friendship. I needed their support. And I had to take that risk in sharing something with them that maybe they didn’t understand in the hope that maybe the friendship was far greater than their concerns and their fears around something they knew nothing about. And I was very lucky that that was the case that all my friends supported me regardless and have helped me to this day with acceptance. And also, I guess what also helped at the particular time was seeing people’s reactions. Nobody ever reacted badly to me. Nobody ever ran away. Nobody ever stopped kissing me or touching me or hugging me. Nobody ever did any of that and this is back 11 years ago where there was still great concerns around HIV through touch or sharing coffee cups, or whatever that may be. So I think for me, over a period of time, the support these friends gave, and their acceptance helped me develop a greater acceptance of the virus as well and also start to let go of some of my fears of transmitting the virus to other people.

LA:
So, after you were diagnosed, tell me a little bit about your journey at that point.

DC:
So, when I was first diagnosed, I took my little piece of paper that my doctor had given me, and I called the Alfred. So I called them as soon as I left that doctor’s appointment, but they only see people on a Thursday, so I had basically a week before I could actually see a doctor. So obviously that week was a very challenging, very difficult week. When I first walked up and saw my doctor, the first thing he looked at me, and he said, “You need to speak to someone, don’t you?” I think he just saw that I was basically falling apart, on the edge of falling apart. And I guess as soon as he said that I basically broke down and I did start crying. The very first thing he did, he picked up the phone, and he said, “We’re going to book you in with a counselor. We can check your blood levels, we can give you information about HIV, we can talk to you about your future, but the first thing we need for you to do is to talk about this with a counselor.” And I guess for me it just highlighted at the time, that for a lot of people, the greatest concern is actually not the virus itself, it’s how people cope with that on a psychological level.
And I guess I’m very thankful for my doctor that he did that straightaway, that he saw that I was about to fall apart and I really needed to talk about it. And not so much just talk about it with a friend where I had to provide them with the information about the fact that I was going to be okay, I wasn’t going to die, it’s not a death sentence, and I won’t be able to give it to you by touch — someone who could just sit there and listen to me talk for an hour was the most amazing thing in the world. And that counselor that I saw for a start, I guess she was very influential as far as my acceptance of the virus, but also understanding how important that circle of friends were to me and how important it was to keep talking about it. If I hadn’t have kept seeing the counselor, I probably would have sectioned off this part of my life and put it into a closet and not discussed it. But luckily through the counselor, it kept that door open and kept that conversation going. And I guess over that 11-year period, there have been — there’s sort of a few key milestones that I’ve reached a greater level of acceptance and disclosure. So even back then, I had a circle of friends that I told, but I didn’t tell family. I didn’t really tell work colleagues. So I was very selective about how I told at that stage and I guess that stemmed into my own internalized stigma of how I thought people would react towards me by having a virus like HIV.

LA:
What sort of things did you do at the time to really help you to begin to move forward and take those next steps? You were talking about that just then saying, that over the 11 years there have been some milestones for you. What kind of milestones did you experience, and how did they change you at the time?

DC:
The few key milestones for me in particular have been six years ago — six years ago I came back from traveling overseas for a couple of years. Prior to travel, I chose not to take medication so I had all sorts of, I guess, internalized stigma about taking a medication for the rest of my life. Was that medication actually going to do more damage than good? Was I ready to start taking something for the rest of my life? And also too, my doctor when I was first diagnosed, kind of described the virus as living in harmony in my body. The virus wasn’t taking over, it wasn’t going anywhere, it was there, but it was almost in harmony. And I did take that quite literally, and I guess almost romanticized about the idea of well, I have the virus, but it’s okay, it’s not going anywhere which is why I chose to go overseas and travel without taking medication. For me, that became a major milestone, because after the two years of travel, I came home incredibly sick. I came back with a very low t-cell count, viral load through the roof, two AIDS defining illnesses, and also a parasite in my system called leishmaniasis. That became a milestone because I needed to actually accept the fact that the virus actually had control over me as opposed to me having control over the virus and I needed to regain control over the virus. I couldn’t continue to allow the virus to control me.

So that was a milestone in the sense I started taking medication and I guess — well, prior to travel I told a select group of people. Not everybody knew. And so I actually was still keeping a part of me closeted. There was a part of me that I was hiding from people and I didn’t like that. I didn’t like the fact that I felt like I was one person around a group of people and then a slightly different person around another group of people. And I felt that I couldn’t go forth being two different people. I just wanted to be me. I just wanted to be the me that is gay, HIV positive, and liked to talk about my experience.

LA:
How different were the two different versions of you?

DC:
I’d still like to say that I was still a bike rider, and hand stander, a keen gardener, all those things. That hasn’t changed. For me, the different part is I’m 100 percent honest and open and I feel so much happier about that. I never liked that fact that I was hiding part of my life from people. And while it doesn’t define who I am, it’s still part of who I am, and it’s an important part of who I am. And so, for me not being able to share that with people — I felt like I wasn’t being me entirely. I was maybe being me like 80 percent, you know? Or maybe 70 percent, but I wasn’t being honest. And for me, I guess I like to be honest. I think for me that builds closer relationships and closer connections. So now the other side of that period of time, I feel my honesty strengthens friendships or it can create new friendships or I feel very much at peace with the virus now. I feel very much like I’ve completely accepted that I have this virus where maybe part of me didn’t really accept that I had the virus. If I didn’t have to tell everyone it meant that it didn’t really exist. And for me that is probably the greatest contrast in the two worlds. Part of me lived in denial, now I don’t live in denial at all.

LA:
When you were living in denial, or when there was a version of you that was living in denial, was it solely being HIV that you kept secret? Or were there other things that you found were being kept secret along with that?

DC:
No, only the HIV. Yeah, for me it was only the HIV. My sexuality I’ve always disclosed and I’ve never really had a battle or a problem with telling me about that. It was entirely around that one thing and I think for me once I did reach that level of acceptance with the HIV it was almost — it was a second coming out. It really was and a lot of people do describe an HIV disclosure as a second coming out and far harder than coming out as gay. Not saying that coming out as gay is easier or a walk in the park, but — well, it felt like a walk in the park compared to actually disclosing to people that I was HIV positive. So for me, no, it was only that one component of my life where I felt that I was in denial about.

LA:
What was the biggest fear that you had with the group that were getting — for want of a better term — the false self? What do you think was the biggest fear that you had about not being real with them?

DC:
I was scared that they would reject me. I was scared that they wouldn’t want to close relationship that we had. I was scared that they would treat me differently. I was scared that they might maybe hear a point from the news about HIV diagnoses or tap into some of the societal stigma around HIV. And at that stage, prior to where I’m at now, I guess I didn’t feel comfortable enough to actually always carry people through and educate them. Now, I feel like I’m always putting on my little sexual health education officer hat whatever that may be and telling people or educating people about whether it’s undetectable viral loads or prep or safer sex practices or treatment as a prevention strategy. I feel really comfortable with where I’m at and I also feel really comfortable that I’m going to live as long as everyone else, maybe, if not longer. Where I felt that prior to that I was unsure about how long I may live for, I was unsure about how my health would play out in the future, and I didn’t have the strength or the ability to educate people. Now I do. Now I’m at a very different point where I will live a long life and I’m happy to actually educate people about sexual health and HIV and what it’s like to actually live with HIV for a long period of time.

LA:
It is funny that you talk about the coming out because coming out as gay and coming out as HIV obviously have similarities in the sense that, you know, there’s this secret that we’re wanting to hide and that fear of a disconnect with our loved ones if we were top be exposed as being that. But over time we also find that we develop this strength and this ability to accept who we are and then we reach the point where, you know, being gay becomes a part of who we are and not the whole. It’s part of the equation. And I mentioned that — certainly from my discussions with you that’s what HIV has been for you. At what point did you finally say goodbye to that other version of you and realize that that version was well and truly gone?

DC:
I would have to say about two years after I came back from travel so probably maybe four years ago. Four years ago I decided to do a peer support group at the positive living center. Up until that point, I still didn’t know anyone else that was HIV positive. I knew of other people in the world that were HIV positive, but I didn’t have any close friends or I hadn’t really had many conversations with other gay men about the HIV diagnosis. Once I did that peer support group for the first time I was in a room full of other gay men — HIV positive men — and hearing their stories. And at that particular point, I realized that I wasn’t alone in this and I never felt like I was alone. I knew that, you know, there was 36 million people in the world that have died of this and another 36 million people in the world living with HIV and AIDS. I knew that I wasn’t alone but I hadn’t connected into that community. And for me, connecting into that community was probably that point where I did go, “Okay, I’ve reached peace with this. I’m okay with this now. Because I’m not the only one that’s affected by it. Everyone else has really diverse stories and sometimes much harder stories as far as other people’s level of acceptance whether it’s family members or work colleagues or whoever that may be.

And I guess what it actually did for me at that particular time was it normalized it for me as opposed to feeling like I was the only one affected by it I realized that I wasn’t. I guess probably the two fold part of that for me was when I was coming out, or when I came out — when I was — what was I? Twenty? When I first came out? Twenty years ago — I didn’t necessarily connect to the gay community. I still embraced it to a degree, but I also collected friends from all walks of life and I didn’t really hang out in the gay community a great deal. There was no denial about my sexuality. I knew that I loved men and having sex with men and was attracted to men but I didn’t feel the need to fit into the gay community because I’d actually found other communities to actually accept me. Once I did the peer support group at the PLC, I felt this need or this want to connect to this community and also give something back as well. I guess once I started to talk to people, I realized that there weren’t a great deal of people that were comfortable openly admitting they were HIV positive and sharing their story. There was a select few people, but not enough. And I guess I wanted to play a role in that. I wanted to be someone who would openly have the conversation with anyone, any family member, any person on the street — whoever that may be.

So that was a point where I let my old self go and accepted that as you said before, it’s part of me and I would have never have thought that it would be part of my life to this degree and it has been an amazing thing for me as far as turning something that could be so negative into something really positive. No pun intended with that. And I actually really love that. I love the fact that something that has given me so many challenges in life has also, dare I say, bared so much fruit that — for me to be able to give something back to the community, to be able to have these conversations and when I do these sort of conversations or talks I feel like it’s quite self empowering. I almost want to talk more, share the story more, and discuss it more and more. And so HIV is a really important part of my life. It’s one part of the equation, but it’s a really integral part of who I am today and how I see myself going forth in my future with what I can give back to the community and also back to society as a whole.

LA:
So I actually really love what you said there, and it actually reminds me of a post a friend of mine who lives in the UK wrote recently. And it was such an amazing post that I actually pulled it aside thinking this is going to be really interesting to share at some point. But I’ll read you what his post said. He says, “As the day draws to a close, I’d like to give thanks and express all my love to my family, close friends, and partners over the years who have loved, supported, and been there for me as always. Today I acknowledge my 30th anniversary of being raped and the impact and change that left me. And celebrate the amazing life I’ve had as a result. But mostly for the persons who allowed me to be and become. I would never wish what happened or how on anyone, but I’m so proud of the man it’s allowed me to become. My friends, my family, I love you all. I would not be here today without your support giving me my strength.”

I just think that’s such an amazingly vulnerable, open post to put out there in Facebook. What’s your thoughts on that? I mean in terms of how HIV has impacted on you? You’ve just spoken about the strengths. Without trying to diminish the other side of it, what have been some of the upsides of being diagnosed HIV positive?

DC:
For a start, I think that post is beautiful. It’s beautifully articulated and it is taking something that people would see as negative and could mess up the rest of your life, and turning it into something actually really positive and being thankful for it. When I was first diagnosed there was some piece of information that I received at some point — I can’t remember where it came from — there were some stories of people that were positive and one person in there had said it was the best thing that happened to them. And I kind of read it at the time and I went, “I think I get what they’re saying, and I hope I get to that point at some point in life, but I’m sure as hell not there yet.” And I’m definitely there now. I’ve been there for probably a good four years. That I have got so many positive things out of it. And for me, the list is probably really infinite. I could probably just keep adding and adding to it. The main things for me are the relationships that I build because people see me as someone that wears my heart on my sleeve. I’m honest, I’m open, and I haven of shame about my past where prior to traveling, I guess I still did have shame about my past. I had shame around my virus.

Over this journey that I’ve gone on in the last 11 years I’ve learned to let that go and not feel shame anymore. I feel shame is incredibly detrimental to people’s own self perception and their own mental health and their own well being and I think being able to let go of that shame for me has really transformed me. I’d like to think that regardless of the HIV I still would have arrived at maybe a similar point. I guess it’s a question, a hypothetical one that one can never really answer. I can ponder it and hypothesize about it. For me, I’ve learned a lot about myself. I’ve learned a lot about the importance of honesty, the importance of integrity, the importance of actually just allowing other people to see me for who I am and not putting up a barrier or a mask or pretending to be someone that I’m not. And I guess for me the HIV has helped me, in a weird kind of way, identify who I am. The HIV has put me into counseling numerous times — counseling which I’m all really thankful for — and completely encourage anyone to dig into at some stage in their life.

And I guess the HIV has allowed me to understand myself on a far greater level than I ever did before and maybe there might have been other challenges in life, or there would have been other challenges in life that I would have faced, but the HIV for me linked to having such bad health especially once I came back from travel. And a very rocky road to regain good health. For me, so many positives have come out of that. The way that I look after my own health whether it’s stress levels, relaxation, whether it’s diet — whatever it may be I feel much more in touch with who I am and I can actually thank the HIV for that.

LA:
Daniel, thank you so much for sharing your story with us today. I wish you all the best. Again, thank you so much.

DC:
Great, thank you very much. And once again, I’m very happy to talk about HIV and I’d love to come back and discuss some of these areas in further detail.

LA:
Great, and with that, if anyone has any questions that they would love to have Danny address, please feel free to send them into Lawrence@releasehyponsis.com.au and we’ll make sure that in the next episode we’ll address those questions and get them responded to for you. And we’ll look forward to speaking to all of you in the next episode in the next couple of weeks. Take care.

SITES THAT DANIEL RECOMMENDS:
The Drama Downunder
Victorian AIDS Council
Living Positive Victoria
Phoenix Workshop

Lawrence Akers

About Lawrence Akers

My approach is simple; I work with clients to determine what they want to get rid of, what they want instead and what that gap in their resources are that is preventing them from doing it. My focus is not just on motivation but on the capability to do it as well.

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