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Seroconverting at 15

Wednesday, 01 July 2015 Written by // Bob Leahy - Editor Categories // Youth, Newly Diagnosed, Features and Interviews, Living with HIV, Population Specific , Bob Leahy

Bob Leahy talks to Preston Leon, a 16-year old man from central British Columbia diagnosed with HIV a year ago, about what it’s like to find out you are HIV-positive when you are a teenager in a small rural community where HIV isn’t talked about

Seroconverting at 15

Burns Lake, British Columbia

Bob Leahy: Hi Preston. Remind me what’s the name of the place you live in? 

Preston Leon: I live in Burns Lake, British Columbia. Probably about four or 5-thosuand people there. I’ve grown up mosly around here and I spend my time farming, being out in the country. We have a few horses, a few cows, roughly 300,000 acres on one property and 80,000 acres on another.

OK. I want to hear your story. When did you find out you were HIV-positive?

On June 14, 2014.

You were a gay young man living where you are now, I gather. Do you know how it happened?

What happened was that after graduation I met this really nice guy – still in touch to this day. He’s 29 now. I met him at the Burns Lake Ferry Landing. We hit it off. We stayed in contract, had a few dates, and on one of our last dates, it was out by a lake, it got very heated, very intimate. Then he called me one day. His job requires him to get checked out and while he was getting checked out, his HIV status came up. He called me right away and he was crying. I wasn’t really too upset, I was just quite happy that he was being honest. So I went and got tested and I was really hoping it wouldn’t come back positive

Did you get a rapid test or did you have to wait for a week or two for the results?

I had to wait.

What was that waiting like? Were you nervous?

When the local health centre called and told me I had to see them, yes I was quite nervous. And then when my nurse practitioner told me I was positive, I broke down. I felt that was the end. The first thing that came into my head was ‘this is it. I’ll never be able to have kids, I’ll never be able to date anyone. What am I going to tell my friends? What if someone finds out? How am I going to tell my grandfather?” (Preston lives with his grandfather.) You know I haven’t even told him yet. He doesn’t even know I’m gay. I’m sure he’ll accept it if I tell him. I’m just not ready to tell him.

Anyway, I knew I had to leave the health centre and go home so I pulled myself together a bit, and went for a nice long walk in the forest, thinking of everything, trying not to cry, trying to stay positive. When I went to bed that night I couldn’t sleep, and I started to think what my deceased relatives were thinking.

I know you were concerned about dying at the start, Preston. What does it feel like at 15 to be confronted with that kind of news?

Well it’s really hard. It was kind of like thinking you have nothing. At that time I really didn’t have much and knowing that I had this, I started thinking about how was I going to pay for my medication, where was it going to come from, who do I talk to.

So who did you reach out to?

My nurse practitioner that I got the test from in Burns Lake. She told me to get started on treatment right away, and I said “OK”. I kind of thought about it. It took me about two weeks. I didn’t want to deal with anything and I had no clue what to do. I just wanted to be alone for a while. Then I started watching documentaries and going on the internet. I typed in “people who have HIV” and started reading personal stories. It made me feel a bit better, a bit stronger. I had felt like I was the only one who would ever contract this virus. This is like Hicksville out here. If you come to this town there is no sign or poster warning you about any of this stuff. Nothing. No one is worried about getting this virus.

But you knew the risks out there, no?

Not really. People didn’t come to my elementary school. I knew there was stuff like that but I thought that you had to go with a prostitute or something.

Are you connected in any way with the gay community? Do you speak to other gay guys or not?

Not really, no.

OK, let’s get back to your going on treatment. What happened?

Yes, I was asked to go back really soon so I could get my medication going,

Did you do any research to find out if that was the right thing to do?

I did. It told me what HIV did to my immune system and I thought “Oh wow, I better really take these then”. So after I found all that out - it was about two weeks later - I emailed her back and said I would come in tomorrow. About a week later my meds came in and I started taking them.

In BC you don’t have to pay for them right?

Yes, but even if they didn’t my (aboriginal) status would pay for them.

So you went home with a bottle of pills. What are you on?

I don’t know. I don’t even look at the bottle. The first pill was really hard to swallow, I can swallow them now but at the start I thought “Am I honestly going to be doing this the rest of my life?” I was really hoping I was doing the right thing and that perhaps someday I wouldn’t have to take these stupid medications. But I was really thankful for the medications at the same time. Now I can’t forget therm. I wake up every morning and take them. Every morning.

How long did it take to get your viral load to undetectable?

It took like a month. I felt really good about that. I felt as if I wasn’t even positive. I know I’m positive and I’ve got to be really careful in the future, but it made me feel really good when my doctor told me.

Do you understand what undetectable means in terms of how infectious you are, how able you are to pass on the virus? Did they say you still need to use condoms?

Yes, they told me to withdraw from sexual contact as long as I can. And I’ve not been intimate since.

Are you planning to change that? (laughs)

(laughs) Yeah. I can live without sex but, you know, sometimes when you are young as I am, it’s got to happen.

And you know, now your viral load is undetectable and stays that way, you are likely not able to transmit the virus to anyone, so there is really no reason for you to hold back, right?

Yep. But at my age you can easily become a dog. I see people my age just going around and I think "I don’t know how you have the energy to do that.”

But knowing what you know, how would you go about disclosing your status. Have you been thinking about that?

I have. I really have no clue what I would say. I might just as well be blunt about it. I’m on Grindr and on the app I actually have myself under poz.

That's good. Do you know about the laws that tell you when you are required to disclose? Has anybody ever told you about those?

No. Well they probably told me but I’ve probably forgotten about it by now.

So you don’t know when you have to disclose?

No. When you are 18 right?

No, 'fraid that’s not the right answer, Preston. It’s too complicated to explain here but next time you are talking to your AIDS Service Organization, you want them to fill you in on that, because it’s important you know. Because some people are going to jail for not disclosing and you want to make sure you don’t get into trouble. OK?

Anyway, while we are talking about disclosing, and going back to when you were first diagnosed, I’m curious who you told and what the reaction was?

Because this guy I got it from knew my sister – they went to school together – the first person I told was my sister. I think she cried more than I did

So that was a year ago. You are not really out in your community, or are you?

People of my generation, a lot of them know. My friends know and they tell me “you’re no different.” They had a lot of questions, like “is it going to kill you?”, “do you feel different?” They were just worried for my health.

Now when I met you just last month you were attending a Canadian AIDS Society Forum in Ottawa for people living with HIV from across Canada. Was that the first time you had met many people with HIV?

Yes. It felt really good. It was amazing to meet people and hear their stories. It kind of felt like I was at home with my own family. I honestly could not believe I was before people with the exact same illness I have. I couldn’t believe these amazing people were all positive.

I think that’s a common reaction. When you first get in a room full of people living with HIV it kind of blows your mind. You see men and women, people of all ages, a complete cross section of society. Do you want to get more involved in the community?

You’re talking to the Pacific rep for the new Canadian organization for people with HIV. I would love to get more involved. I picture this as something that really will do good in the long run if we push it. I feel there should be voices ... there are plenty of people like me who don’t have connections, who aren’t on medications. We need to make it clear that medications will help you and this is how you get it. If feels important in my region at least, the Pacific.

That’s really great. You see any issues that are particular to positive youth out there?

There’s definitely a lot of fear. You know if I were to tell all my family members, I would get treated a lot differently probably, as if I was a kid – maybe verbally or even physically abused. I really do feel the need for youth services to help them through it. There have been more suicides than births in this town, you know, and they were all under the age of 18. We need something put in place so that people have somewhere to turn or to call. I’ll even put posters up warning youth of the HIV epidemic

So there is a huge need for education. Let me ask you a couple of general questions before we wrap up. Are you optimistic about living a full life?

I sure am. But stuff happens. And I might not.

Do you think HIV is going to kill you?

Probably not.

Do you think there is going to be a cure?

I have hopes in that.

Are you happy?

You betcha I am. That I have family, that I have friends, that I’m healthy. It just makes my day that I’m getting involved and that I’m starting to meet a whole ton of people.

That’s a good note to end on, Preston. Let’s talk some more next week – you have some stories you said you want to tell me...

To be continued . . . 

Preston says: Hey my Twitter account is @Preston_leon or you can reach me at my email :) This email address is being protected from spambots. You need JavaScript enabled to view it.


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