By Kellee Terrell of The Body
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.
Read the rest of this interview on The Body website.