Project Runway's Mondo Guerra on Treatment Teams, "I Design" and What He Learned From Maria Davis

Associate Editor
Mondo Guerra
Mondo Guerra

Ever since Mondo Guerra publicly declared his HIV-positive status on Project Runway as a competitor during the eighth season, his life hasn't been the same. For the past three years, he has worked with Merck & Co., Inc., to deliver important messaging around HIV treatment and adherence via I Design. I Design emphasizes the ability of people living with HIV to tailor their health care to their needs.

Each year that Mondo has been a part of I Design, I've been able to catch up with him for a quick chat to find out what's new and how he's affecting people's lives. This time, we were able to catch up in San Diego at the U.S. Conference on AIDS. This time, Mondo was more candid than ever, discussing how his status has affected his family, what he's learned about women living with HIV from his new I Design partner Maria Davis and why it's OK to get emotional with your doctor.

What are the things that have marked what I Design is doing in 2014?

I think the major thing for me personally is, this is my third year with the campaign. And it's really grown in the past three years. I love that we've always implemented this idea of participation with the campaign. We always try to do something that is community focused, and has this idea of engaging them through different mediums.

The first year we did kind of like a collage, and then last year we did the painting.

This year we have something really special planned introducing our newest member of the team, who is Maria Davis. She's really, really wonderful.

I'm a gay man that has lived with HIV for 14 years and it's really amazing to talk to her, have this conversation with her. Because there's so much more to being HIV positive. And to have this different point of view, this different perspective, and hear how she handles living with HIV, as a woman -- I really feel like there is definitely crossover. We do definitely have emotional similarities, but there's a lot of physical things that are completely different.

And this year, especially, I feel like there's a whole group of people that I really want to see and share what's been happening with me. Through the campaign, we're still focused on really empowering people living with HIV to take a tailored approach to managing their treatment. But this year, what we really want to ask is, "When you get into that doctor's office, how do you feel? What do you feel?"

At this point, in my own healthy life -- it's really been expanded. Because I talk to my HIV doctor about how I am feeling emotionally, how I am feeling health-wise. Because we have to gain weight, and all that stuff. So I'm really focusing on physical and emotional, at this point, while still talking about HIV. Right now what it really is, is about engaging not only your HIV doctor, but your entire health care team. For me, it's about talking to my therapist, and talking to my nutritionist. And these are all really important players in managing my own healthy life.

When I went into the doctor [in years past], I didn't even want to go in. There were parts of my life, in living with HIV, that I didn't show. For me, it was really exciting when I realized that I wasn't defined by HIV. Since I was 31 -- I'm 36 now -- all the positivity that has come out of all of this has really allowed me to engage more with my support system. For me, it is my health care team. It's my doctor, and it's my therapist, and it's my nutritionist -- even my pharmacist (I talk to her every time I go in there). And it's not all clinical stuff. It's just allowing them inside, you know? And telling them how you feel.

And it doesn't have to always be medical things.

I was dealing with a lot of shame, and a lot of guilt. And I wasn't allowing people to help me because I felt like it was my fault that I was [infected] and that I transmitted the disease. So, at this point, I'm really letting go of personal stuff.

It's taken a long time. I was diagnosed when I was 22; I'm 36 now. And it really is so much, you know? So, so much. But for a long time I have been so involved in creative goals. Like accomplishing this, wanting this, needing that. And that makes me happy. That keeps me going. But it doesn't necessarily keep me healthy. Because that comes with its own stresses, and whatnot. So I think now that I'm really focusing on personal goals that's going to really make my healthy life victorious.

You were saying before that you've been doing I Design now for three years. This is my third year interviewing you and I have seen the evolution of the campaign. And from what you've said just now, I see that there's currently a really great emphasis on treatment teams.

Right.

That's a hot topic in HIV care right now.

But I also think that it can be overwhelming for people to go from just having a doctor to being in care and having several new people in their life monitoring them.

What do you say to people? How can they balance those relationships, or manage them?

I think that it's important to take baby steps. We're always in a learning process. If you feel like you're overwhelmed, step back.

My mom always tells me, "If you're feeling overwhelmed, or if you feel like something's not working, what do you eliminate?"

For example, maybe you are seeing a nutritionist, and a therapist, and a doctor. If you aren't able to handle all of that right now, you should ask yourself, "How do I navigate that?" Maybe you see the therapist once every two weeks, instead of every week. Maybe you make a deal with your nutritionist, like, "I'm doing this, this, this, this, but one day, I want to eat whatever I want."

So, make it personal to you, but also be able to focus on those goals. It's really important to make goals.

I think that lesson was learned when I was on Project Runway the very first time, in season 8. I was very shy. I didn't want to participate. But then I finally made that decision: "OK, I'm here. This is an opportunity. I have to do the best I can."

At that moment, it wasn't just for me; it was for a lot of people in my life. And then I would say, "OK, let me just get to the next challenge. I'm going to knock it out of the park." And then I did. And then after that, "OK, the next two -- I'm going to stay here till, like, No. 6." And then I did, and I did, and I did, all the way to the end. And now that I look back, it was really because I was setting goals for me, for myself.

You were taking on each challenge piecemeal -- looking at what was in front of you instead of being like, "I want to win Project Runway."

It wasn't the big thing. It was taking the little things step by step, which can apply to living with HIV.

Right. You have to start somewhere. And for me, it was really allowing myself to understand that I was good enough, still -- that I wasn't damaged goods. I'm just being completely honest with you about that. And that I still had things that I wanted to accomplish.

But even through that, it was still very difficult. The next thing that I wanted to do was not allow the HIV to define who I was. And I think that really happened when I got onto the show, when I was able to share my story.

Beyond that it was just step, after step, after step. And, yes, you're always going to have peaks and valleys. You're always going to have highs and lows through everything -- whether it's through your treatment, or through your communication with your doctor, or something personal in your life. You're always going to have that. I think it's very, very easy to give up. And everybody has that moment where they're just like, "Ugh, this is too much. I can't do it anymore. I don't even love this. I'm not into it. I don't want it."

But the fact is, it's going to be tough; that's just what it is. And I think what you talked about with the health care team, and everything: Yes, it's a lot to accomplish. But it's also responsibility.

I feel like not only am I responsible for myself, I'm responsible for my creative endeavors. And I also feel like I've taken responsibility to help -- to bring attention and share the message. This is why I've been with the campaign for such a long time. It's because this is very, very important to me. And there are so many reasons why. And I'm sure you can probably guess why.

Because it's very important for everybody to know about HIV. I think there are a lot of people that still don't know, or are avoiding it. And whether you're infected or not, we're all very much affected by it.

And I can say that I'm so proud of my family because, for me to be so scared to talk to them about it -- from knowing what I've heard from them, in passing, before I was positive, and different things like that -- that it could be very scary for them, too. But since I've been able to share my story with them, they've really taken that responsibility to educate themselves. I see them talking about it. And I see them not being afraid of it anymore. I think that's really, really wonderful.

My family has lived in the same community for four generations.

Where is that?

It's in Denver, Colorado, in a place called the North Side. Well, we call it the North Side. And it's just amazing to see them really adapting, and really responding to the situation. Whenever I go and give a talk, or whatever it is, they're there. And that support is so meaningful to me, because I know that they want to know how I feel.

I'm a very honest guy. I always kind of wear my heart on my sleeve. And I think that honesty really translates through my work -- whether it's me working on the I Design campaign, or through my personal work. I'm always trying to invent and find out a way to share, share so much of myself. And I think this is always a really great opportunity.

What has working with Maria Davis taught you about the things that face women living with HIV?

Personally, I was really ignorant to it. I never thought about the struggles that they might feel. I feel like there's a lot more discrimination against women. And I feel like a lot of women that are living with HIV don't have a voice because society doesn't expect them to be HIV positive. And I feel like they have more to battle. I feel like there's a lot more emotion attached from people's opinions about women living with HIV.

I was just with Maria in Louisville, for Louisville AIDS Walk, which was wonderful; it was a great event. We walked from the venue to the hotel. We just were talking about our lives. And we were sharing stories. I was talking about my mom, and my dad. We talked about my sister. She talked about her daughter and her son, and what they're doing.

It was just nice to be with her. It was that maternal energy that, on a personal level, made me very comfortable. It was knowing that we've had similar stories, but also having that motherly love from somebody that is going through similar things that you are. And that's something different that I don't have with my mom, you know? That's just amazing for me, to be able to share this, this campaign and this experience, with her. Because it has really comforted me, in a lot of ways.

I'm getting a little emotional because I'm thinking about my mom, and if she was HIV positive what she would have to deal with. Maria, for me, has opened my eyes up to that, because she does have children. I feel like she has to battle a lot of opinions, and a lot of assumptions, a lot of all that attached emotion to the disease -- so much more than me, as a male, living with HIV.

This transcript has been edited for clarity.

Mathew Rodriguez is the community editor for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.