By Kellee Terrell
October 19, 2010
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 challenge compelled 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.Can you describe the moment when you tested positive?
Yes, I was living in New York City and I was in a relationship. I went to a private doctor -- this was in 2001. I don't think there was a rapid test back then. So I left and I waited about five days. I was called back into the office and there was no way around it. The doctor just flat out told me that I was positive.
I got into a cab and I think I was probably really emotionally shut down. I wasn't really feeling anything, but when I got home, I called my mentor. She was the first one I called.
I just really spent some time alone for a couple of days, trying to digest and process what I had learned about myself and about my health. Just reflecting on the past and projecting the future.
How old were you when you tested positive?
I was 22.
So you were 22. That's very young. How long had you lived in New York City at that point?
I had lived there for about two years.
And so what did you think?
The funny thing is that I didn't know what to think because I was very uneducated about the whole disease. I did not want to do anything really -- I was just kind of ignorant to the whole thing. I guess I could say that I was in a bit of denial.
How long did it take for you to not be in denial anymore and to kind of be just like, "Wow, I have HIV"?
You know, it's been 10 years and I completely don't know. I know that after the denial, I had to really change my mind about how I was going to wake up every day. I really accepted it as: This is my situation and I have to move forward. I had to give myself a lot of pep talks to remind myself that I don't have any regrets and that I don't feel sorry for myself. So it was definitely a process. I don't think it ever changed. I don't think that you can ever be 100 percent [OK with this].
Who was your support system at that time? I know you said you had been dating someone. Had you disclosed to him and other friends?
Yes, my partner back then was the one who actually took me to the doctor's. So he knew from the very beginning. And [I also had disclosed] to a really small group of friends. For a long time, they have been my support system.
And how beneficial was it to have people to lean on during those first couple of years?
I just feel like maybe having people in my life that supported me and were willing to listen to me ... It doesn't have to be HIV, I think it could be about anything -- if you're going through any hardship in life, if you need people to trust, if you need people to open up to. Because if you try to do it all yourself, it can be very, very scary.
Did you go to any kind of support groups, any social services? I know you said you were in New York City. Did you at all go to Gay Men's Health Crisis or anything?
No, I never went to any support groups or anything like that. I was really just relying on my friends to kind of help me up.
How soon after your diagnosis did you start treatment? And was it something that you were scared to start?
No, I wasn't scared to start, but my doctors had told me that I was pretty healthy and that they wouldn't start meds right away. I didn't really start meds until probably four years after. And the thing is that I was very, very irresponsible about taking my meds. It was just really hard. That was definitely a real lifestyle change for me.
Adhering to the medication?
Yes. Taking it all the time. The problem was that it took a really long time for my doctor to find a plan that worked for me. Things that weren't -- I feel like sometimes it was hurting me more than helping me.
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.
You said that you hadn't dated. Do you mean that you just didn't put yourself back in the dating game, or that you didn't meet anybody you liked?
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.
Let's talk about the show and that moment when you disclosed. And may I say that I watched the clip at my desk at work, and tears were coming down my face. It was very powerful. Did the show's producers know that you were positive? Coming in, did you have any intention of disclosing your status sometime during the season?
In the process of the application and audition, you have to go through so many different things, like [your] medical background. So they knew that I was HIV positive, but they were really respectful of my wishes to not disclose that or talk about it on air, because it shouldn't be an issue. I'm not there to be this poster child for HIV. I wasn't planning on that. I wasn't thinking that. I wasn't anticipating that.
I was there to fulfill a dream and to work hard and challenge myself, not as an HIV-positive person, but as a fashion designer. I didn't ever expect all of this to happen.
So it just kind of happened?
Yeah, it really did just kind of happen. It was weird, but that particular day we were presented with a challenge and it was influenced by childhood pictures. A lot of those pictures had my family in it. And it just really started me thinking, and I designed a couple of textiles, and the thing that really made me go with the plus-sign or the positive-sign textile was April Johnston. I showed her the two and she said, "This one's more you." And with her just saying that without even knowing the story, something clicked and I'm like, "Yeah, that is me. That's it." And so I used it.
Then they sent in my mom, and I wasn't expecting that. So that was a whole new [dimension] that just added to, not the pressure, but, like, it really threatened me. The [producers] were asking me, "Are you going to talk to your mom about this? How do you want to handle this? Because we know what your situation is and what your design's about." And I had [spoken to] Tim Gunn about my inspiration: "I haven't disclosed to the other designers about my textile," this and that.
So being with my mom, it was hard because I didn't talk about it. I still didn't talk about it [with her], but I was talking about it in an interview. In some ways, when you're there, your interview is sometimes very therapeutic. You can really let out a lot -- being stressed, whatever it is that you're feeling -- that you can't necessarily work out when there's another seven, eight designers and strangers practically around you.So I didn't tell my mom. And going onto the runway the day of the challenge, after the runway show, I didn't plan on talking about it. When initially asked, I lied, still kind of danced around the whole inspiration. I told them it was about color and shape and construction paper and this and that.
It wasn't really until Nina Garcia said, "Well, I wish I knew what the story was." And it felt like somebody was asking me, somebody very kind and concerned. It was just a different voice. I really felt like it was somebody else, other than Nina.
Usually, she's such a spitfire on the show. She's our favorite, but she's also so sassy in a kind of fabulous way. So in that moment, she was so endearing.
And it wasn't forced. It wasn't like she was prying into my personal business. So I felt really comfortable being like, "Hey, Nina. You asked me what my story was and this is it." So I just talked about it. And in the first couple of sentences, I think you can see even in the show that I kind of get choked up and a little teary-eyed. But after I started talking about it, it got easier and easier, and by the end, I had lifted so much weight off my shoulders that I had just been holding onto for such a long time that I really did feel free.
I felt love again. I felt love for myself. I felt love for my creative mind. I felt love for life. I felt love to really conquer this whole thing. And so I really did feel like a new person, and it was amazing. That was 100 percent exactly how I felt. I mean, I was walking on air. It was amazing.
It was like your "aha" moment.
Right, it was like my "aha" moment, and I never thought that it would be that easy to talk about. But for some reason, that day I was definitely being guided. And I will never forget that day. I will never forget it. It was amazing.
So when the cameras had turned off, what did your cast mates say? Did they hug you? Did they tell you how proud they were of you, how courageous you were?
I got that all from them. They really admired my courage and they complimented me on how strong I was and how I wasn't trying to make it a huge issue -- just how I handled the whole situation. It was nice. And when we walked upstairs after taping that, the producers are always behind closed doors. You can never really see them. Some of them came out and said, "Wow, we didn't expect that. We can't believe you just did that."
And for some reason, I couldn't believe that I had just went there either, but I didn't really care. I felt so good about what happened. There was no turning back at that point. Anything that was going to be in my way next, I was ready for.
So that was kind of the precursor to you talking to your family about your status?
Yeah. The thing about it is, after I did it and after I had a couple of days to really think about it, I started psyching myself out again. Because I had to come back home knowing my disclosure was filmed and was airing, and I had to tell my parents before it aired. That was a lot of pressure and it scared me. I think the pressure of that added so much fear to the situation. I didn't actually sit down with my mom and my dad until the Monday before that episode aired, so I was really avoiding it.
Can you walk us through that moment?
My mom and my dad really supported my decision to do it. They knew that I had been sick for such a long time, so they kind of had an idea. They basically told me that it can be scary and that our family is based on unconditional love, and we'll get through it. We'll just move on.
What advice would you give to anyone who's just been diagnosed with HIV?
Don't give up. Find somebody you can trust and confide in. Don't doubt what you can accomplish because life goes on. You can conquer this, 100 percent.
Thank you so much. Everyone at TheBody.com wishes you luck at Fashion Week. We hope you win.