When Mondo Guerra was chosen to be on the hit reality show Project Runway, his main goal was to live out his dream of being a successful fashion designer, not be a poster boy for HIV. But one emotional challengecompelled him to disclose on air that he had been living with HIV for the past 10 years. In this exclusive interview with TheBody.com, Mondo talks about living with HIV for a decade, overcoming fear and stigma, and the disclosure that was seen around the world.
As part of our preparations for World AIDS Day , only last week we brought you Part I of the interview. Here is Part II of the interview taken from thebody.com !
What were some of the side effects you had experienced?
It probably ran the gamut of everything. I had sleep issues, whether I was sleepy all the time or I couldn’t sleep. I had crazy, like, mental — I don’t know — I can’t even describe it. Like, weirdness in my head about certain things. Physically, I would wake up and I’d just feel different. I just had never been on something so strong before and [I felt] that my body was probably in some way rejecting the medicine.
So it took a while for your doctor to find the right combination for you?
Yes, it took quite a long time. In the last couple of years, I ended up in the hospital with complications from the HIV. That’s how sick I got. I was in the hospital twice with pneumonia, two separate times, for a year-and-a-half period. [By that point] my numbers really, really dropped. That’s when they really started giving me care.
The thing about it is that I’m an artist. I don’t have a job where I get insurance, so it’s really hard to find the best treatment. So I was relying on state-funded treatment and doctors and this and that. You know, I really appreciate and I’m grateful for all the help I received, but in a lot of ways, it was to the point where I was basically dying to really get a fire lit and find something that was going to work for me.
It’s a really great point that you’re bringing up. How can we keep people healthy longer without their numbers dropping? That has to take a passion from health care providers as well to be more on top of it and aggressive.
Which is sad, because it shouldn’t take for people to be sick and sicker. When you were in the hospital, what were you thinking?
The first time I was in the hospital, I was still hiding the secret and living with it. I was scared. Then that turned into depression. And I think the reason why I ended up in the hospital a second time was because I was just in a really low place. Mentally and emotionally, I was at such a low point in my life that I allowed myself to be sick. That’s exactly what happened. So I ended up again in the hospital. That was really bad. I think the last time I was in the hospital I was in the hospital over Christmas. So I was almost to the point of giving up. I didn’t even want to try anymore.
To live? You didn’t want to try to live anymore?
Yes, right, exactly.
Where did your family think you were over the break, over the holiday?
They visited me in the hospital, but I advised the doctors not to tell them. They would always consult with me without my parents around. And I would lie to [my parents], because I was ashamed and just scared. I was just at a low place. But, I feel like in some cases, you really have to hit rock bottom to make the turn around. And when I got out of the hospital, the last time, I knew that I was unhappy, that I was sick, and my health was quickly diminishing.
So I really made a conscious decision to turn it all around and to really focus on taking care of myself. From sleeping better, eating better, taking my meds on time every day and seeing my doctor all the time. Now was the time to figure everything out that was going on with my body. And I also knew that I had to start setting goals again.
Since I had been HIV positive, I broke up with my partner in New York and had not been in a relationship for over five to six years. And that was really hard for me, too. I wanted to be in love and I wanted to be successful again, working at a dream. So these were all things that I had to consciously work toward.
I realized that when I am being creative and producing work, is when I’m the most happy. So I knew I had to be at that point, but in order to be at that point, I also had to be physically in sync with everything else. And it took a while. It really did take a while, but it all happened.
I tried to, but the stigma behind it, even in the gay community — I felt like sometimes there’s discrimination against guys that are positive.
There’s AIDS phobia in the gay community.
Yes, the AIDS phobia. I would go on dates and I’d disclose my status, and I would never hear anything back from somebody that I thought was nice or could potentially be understanding. I ran into that enough that I just didn’t want to put myself out there to be rejected again. So I just stopped.
It bothered me a lot to think that my own community was rejecting me or that I felt rejected by my own community. On [dating Web sites] guys would describe that they would want a “clean” guy. And I put that in quotations. And I’m like, I don’t feel dirty. Yes I’m HIV positive, but I’m not dirty.
It is really dehumanizing. We’re all supposed to be in this together, but there’s no support. There’s no support. And it’s really sad. It’s the AIDS phobia, the lack of education, even in a community where it’s so rampant. It’s actually quite sad and sometimes you just don’t want to deal with it. So that’s why I stopped pursuing a relationship.
So after you got out of the hospital and you said, “I’m going to turn this around,” did you find love? Did you start dating again?
Yes, I did. I met a really nice guy and we started dating. I can tell you: Once I disclosed to him, he was very wary of the subject and he was looking to Wikipedia for statistics. I just think it’s crap anyway [to use Wikipedia to learn about HIV/AIDS]. I kind of just sat down with him and he was willing to listen. I was like, “You need to actually talk to people that are living with it and probably talk to doctors that work with this disease and are possibly HIV positive as well.” You can’t rely on Wikipedia to educate yourself.
Of course not.
It’s like, “Come on.” And it took him a couple of days to really process it and adjust to it. He came around. He realized that maybe there are safe practices. I mean, we’re still together, so that’s a very good thing.
Wonderful. And how long have you guys been dating?
About eight months now.