“So go out, have sex, be fun. Just be smart and be safe”: An Interview Talking Openly About Living with HIV/AIDS
Director of Community Engagement, Deanna Duxbury
I was approached with the opportunity to hear someone’s story and learn from his experience. It is my hope that in sharing and gaining perspective, we can all continue to learn a little bit more about what it means to live with HIV/AIDS.
Meeting up over reading week made things a bit tricky, so a phone interview was best.
Deanna: Hi Ricky! Thank you so much for being willing to talk to me and share your story! My phone is sometimes a bit spotty but hopefully it will clear up- this is what student pay covers.
Do you mind if I jump into the questions?
Ricky: Hi! No problem, go ahead.
D: Can you describe the moment when you found out you had contracted HIV/AIDS?
R: Yeah, okay, I was celebrating my 21st birthday and it was right after Easter weekend. I knew something was up. I knew that I might be infected with HIV. I was displaying the classic symptoms, I had flu like symptoms for two weeks and it wasn’t going away. I just kind of had a feeling.
For me, I went to the local Gay and Lesbian center and did the test. Back then you had to wait two weeks for the results so I went back.
I remember the nurse- I walked in and I looked at the nurse and she had the file and she looks at it and she looks at me and just says, “Okay. You’re positive.” And that was it. That’s all she said.
In that split second, for me, time stopped. I had suspected it and I figured that would be the result but to hear someone say out loud that, “You’re positive”- for me it was just a moment of “Oh shit. What do I do now?”
D: Of course, that’s life changing.
R: Exactly, it was. So for me in that moment time stopped. For a moment I didn’t think anything. I just remember being like, “Oh crap. I don’t know what to do. I’m not ready for this.”
It was numbing. I wasn’t sad, I wasn’t angry, I wasn’t mad. I just had no idea what I was going to do.
D: I can only imagine, so much of your life would change. How did you come to find out about ACCM then and become involved with them? What about their community has been most helpful?
R: I came to find out about ACCM through- well actually because I’m not from Montreal. I’m from the states. I was moving from an anglophone community to a francophone community and I was trying to make sure that they would have resources for the HIV community for healthcare and support here. I found ACCM because they were the only anglophone group that catered to the HIV community in Montreal.
When I moved here I reached out and I contacted them. Immediately, I met with a caseworker. Well, not exactly a caseworker but more like a one-on-one person. Essentially a caseworker, they answer you questions and help you get settled, but they call it the one-on-one service. They helped me figure out the health care system here because obviously it’s a lot different than in the states.
D: Do you find the healthcare help very different between Canada and the US? Is it more helpful?
R: No, actually I find it more difficult. It’s kind of different because I came from a job with exceptional healthcare. I barely paid anything and I had the care I needed without any wait. I had incredible care. Adjusting was a bit of a challenge. I don’t think it’s inferior. It’s very similar but there’s a bit more of a waiting period. I don’t want to say hoops, it’s not jumping through hoops, it’s just a little more time.
Luckily for me, I’m very healthy, I have a good social network- I don’t really use ACCM programs too much but when I was first infected I used services like ACCM, back in the states. These services were very important to me when I became infected so I wanted to volunteer my time with an organization like ACCM to help other people like I was helped.
D: That’s great!
R: Yeah, so I volunteer there a lot. They have a lot of programs like dinner and discussion, which is great for people to interact. They have the buyers food club. They have amazing programs!
D: It seems like a very tight-knit community!
R: Oh yeah! ACCM is a great place to volunteer for and it’s a great community I’m happy that they’re able to provide services for others.
D: That’s very giving, that you went back to help more people! In your experience, What are some myths or common assumptions people make when they find out that you have HIV/AIDS?
R: It depends on the people I talk to. Luckily the people I’ve been romantically involved with have been neutral. I find it’s more talked about, people are more educated and aware. In that sense, it’s okay.
It’s mostly just, “Oh okay. You’re HIV positive.” I know that’s not everyone’s situation but I’ve been fortunate.
You know, I think some of the funnier ones- I say funny because there is still much education needed- was my best friend and he’s like, “Oh my god. Are you scared about dying?” And I’m like, “Well, yeah! When I’m 80!”
In terms of the people I hang out with, they all seem to know about the disease and enough about HIV to have a very neutral response. They care and they know it’s a liveable condition so I think I’m fortunate for that. I have had experiences in the past, which have been a little negative.
D: My follow-up question leads into that, I don’t mean to wrench out heartbreaking details so I’m sorry if this is very personal. Who was the hardest person to come out about this to? What was their response and how did you handle it? I know you have a great support system, but when you initially found out was there any exceptionally difficult moment in telling people?
R: Kind out. It was a weird moment. I was in a relationship with someone and I told him I was HIV positive and he’s like, “Well I don’t know much about it but that doesn’t scare me away from you.”
D: That’s so sweet!
R: I know, right? I thought that this was awesome so we talked about it and I thought he was coming around. After a few weeks, there was one situation where he got a little inebriated and we got into an argument. I don’t even remember what the argument was about but he just looked me straight in the eye and said, “OH MY GOD YOU AIDS FUCKER”.
D: OH MY GOD.
R: He just lashed out. He was saying things like, “You got AIDS because you deserved it! Because you’re a little whore! Only sluts get HIV!” It was just really awful, really rancid things to say. That took me a while to figure out. I got rid of him very very quickly.
R: It was weird because I thought this person was accommodating and we were having sex, we were intimate with each other at that moment. And I saw his true colours and thought, “Wow, there’s a lot of stigma from people”. That was my worst situation because it started off positive and then I found out it wasn’t.
D: I guess sometimes you really don’t know when people are trying to show they’re educated and modern but don’t actually have that understanding on a deeper level. I am SO SORRY that happened. That was completely undeserved.
R: Yeah, I mean it hurt me at the time but now I look back on it and just think, “Wow that was weird”.
D: Oh yeah. Totally, very weird.
R: That was also like 12 years ago so a while ago. The HIV community would have been different then.
D: What are some day-to-day challenges that you face with HIV/AIDS? Or do you have many challenges that you face with it?
R: I don’t. I do and I don’t.
I’ve learned to deal with things that come with it. The day-to-day challenges really aren’t that bad. I mean, one of my medicines gives me horrible gas sometimes? You know, it’s kind of awkward but it’s a thing I deal with. I mean, it kind of gives me gas and it kinds of sucks.
You learn to manage and mitigate. There are small things like that- I mean, I’m out about my status but I’m not so openly out that everyone knows. Like I’m not incredibly open but I don’t shy away from it. But for things like taking my pills, I take one in the morning and one at night, so if I’m at a party with people it’s hard to discreetly just take them. It’s kind of weird to be vey nonchalant and just take out a pill.
D: They’ll be like, “Oh what are you having?”
I mean these challenges are really not so bad but at the same time I’ve been hospitalized 3 times. For certain illnesses, like once I had a staph infection and the staph infection itself wasn’t bad but because of my HIV they chose to hospitalize me because of how my system would react to that infection.
I mean I live a pretty normal life people wouldn’t really know there was anything different about me but then if you go in for a simple medical condition it might be a little bit more severe because of the HIV status.
D: Okay, so a matter of being more careful and moving your life around for medication. It’s great that you don’t have a lot of serious things day to day.
R: I consider myself very lucky in comparison to some of my friends whose illness has taken a different path.
D: I guess it really does depend. It ranges and like some of my friends when I talk about the fashion show that’s going on they’re like, “WOW you’re helping people on the brink of death!” and I have to tell them, “No, it’s really not just like that”.
R: I think there’s definitely a lot more education that can happen in the community. Sometimes you’re even learning about something and you’re like, “Oh! I didn’t know that before!”
D: Exactly! I was interviewing Roberto before and even when ACCM came and gave us a workshop it was really eye opening!
Overall, do you wish you’d done anything differently? What’s some advice you’d give to the students and young professionals participating in this show and all the people this interview will reach?
R: I mean if I could do things differently I would not want to be infected with HIV. I mean, it’s a tough question to answer because when I got my diagnosis I treated it like the end of the world. I did stupid stuff because I thought my life was over. And then, when I realized it wasn’t over, I gained a newfound love for myself.
For me, I was able to appreciate my life in a new way and not treat it with such carelessness and I had done when I found out I was positive. When I figured out this wasn’t a death sentence, I feel like I gained a lot personally in my life. But for me, having HIV put me down a good path of holistic health after I got out of that stage of feeling like I’d die tomorrow.
I mean I don’t want HIV, I wish I’d never have gotten it, but at the same time who knows where my life path would have gone? I’m happy with where I’m at in my life.
D: I only ask because, when Roberto mentioned you were open to speaking with me, it seemed like you had reached a good place where you had accepted the things that happened and you wanted to share and to give. I just wanted to see how you developed and your journey, coming to a place where you would be comfortable to speak about it.
R: Oh yeah- that was a very long journey. That was not a short journey. When I was diagnosed it took me a good solid like- I don’t know- several years from the day I was diagnosed until I figured out I’m not dying tomorrow. It became gradual after that but man, when I got to that point it opened me up to being more centered and conscious of myself. I was open to making smarter decisions.
D: That’s very life-focused, that’s great.
R: Yeah, live your life! Do things that matter. I started riding my bike, I started doing the things that mattered to me. I started volunteering more and being more compassionate to others. I started wanted to hear other people’s stories because I’d just had a huge life changing moment in my life story. So, I wanted to hear other people’s stories!
If I hadn’t been diagnosed with HIV, I don’t know if that would have happened. It’s a double-edged sword. I still wish I didn’t have it.
D: I know it is like a complicated question because I assumed that you wouldn’t have wanted to contract it. I can understand that you went through a wild phase; I mean it’s an intense piece of news. I don’t know if I would do anything differently.
R: Well, if you think you’re going to die tomorrow you might as well live in the moment because you have nothing to loose.
D: Well it’s great to hear that you’ve grown as a person in that way. Long-term (my last question), have any life plans changed due to being affected by HIV/AIDS? I know you moved up to Montreal and have made changes before but how do you see this affecting your future?
R: Currently, in this moment today, none. No, that’s not true. I lied, I take that back. A while ago it did, I chose to live my life fully. I’m in a wonderful relationship and we’re figuring out how to maybe, eventually, have kids.
D: That’s great!!
R: Yeah, so I’m thinking long-term relationship things. 2.5 kids. White picket fence house. I’m kind of boring in that sense but I still do have to think about it long-term.
I live in a country with access to medical care but what if I chose to move to a country that doesn’t? It’s very normal but I still do take it into consideration because wherever I move I need access to my healthcare, my medicines, my support network,
D: Do you have any other questions for me, or comments to make about your experience?
R: What’s the age range of the people reading this blog?
D: It’s definitely university students. We’re thinking 18-23.
R: The only thing I would share is if someone is reading this and they got to THE END of the interview: GO OUT HAVE FUN HAVE SEX.
D: Haha, I think that may be the title of this interview.
R: No, totally! Do it! But take it from someone who is living with HIV.
One of the hardest things to hear from younger people is “It’s not a big deal! There are medicines and drugs and everything to help live with it.” Like, yeah, but those drugs give your really bad gas-which is very unsexy. And it sucks taking pills all the time. And it sucks if you have a simple health condition you need to go to urgent care and be in the hospital for a week. However, It’s very manageable.
You’re probably not going to die tomorrow living with it but it’s still very hard to live with. So go out, have sex, be fun. Just be smart and be safe.
That would be the only thing I’d add.
D: It’s really encouraging to hear, its really good advice. There are those two spectrums that are like the people who don’t know anything about it and are afraid of it and the people who just brush it off because they think it’s all going to be okay.
It’s good to keep in this mindfulness but at the same time not let it stop you from living your life.
D: Thank you, this has been so great! If you like you should definitely come to our fashion show!
R: Send me the info and I might swing by!