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Mondo Guerra on Adherence: How to Fashion Your HIV Treatment Plan

An Interview With Fashion Star and Project I Design Spokesman Mondo Guerra

September 8, 2012

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What advice do you have for people who may have lots of questions about their treatment, but have doubts or fears about speaking up during doctors' visits?

That's exactly the reason to speak up, because you do have the power. If you ask questions, and you know how you're navigating the disease and how you're approaching your every day, if you know what you're taking and how it affects you, and you talk about all this to your doctor, your doctor's going to recognize that you really are taking control.

Being HIV positive is a big job. You really have to work to manage it. That's the fact of the matter. But you want to work on your HIV treatment, and work with your doctor, so that you can be able to do the things that you love. Because without effective treatment, you're not going to be able to pursue bigger things. So that communication is really important.

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You could have been the face of any HIV-related campaign. Why this one? Why was I Design so important for you to be involved with?

I didn't plan to disclose that I was HIV positive when I was on season eight of Project Runway. I didn't know that that was going to happen on that particular episode; I didn't expect it to happen; I didn't want it to happen, to be honest. It just kinda happened that day. And it happened for so many reasons; it happened that day, in part, to inspire people, and to make people feel safe, and to make people want to talk about HIV more openly.

So when I was approached by Merck about this collaboration with the campaign, I thought it was a perfect fit, because yes, I do have this visibility and people know who I am; they know that I'm not a negative person, that I'm always very positive. Even through my work; it's always very colorful and kinda crazy. I felt like this was just a perfect match for me to lend my voice to this cause. More than that, it was mostly because so many people had so many questions, and sometimes they're just afraid to ask. People can feel comfortable with me, and they know that I talk about things freely and that I'm going to be honest, and very direct, but not forceful or condescending or preachy.

A lot of these medical write-ups and things that you pick up in the doctor's office tell you exactly what they think you're supposed to do. I think that's part of why people don't ask questions: Because they're so used to being told what to do.

That's why, on ProjectIDesign.com, it's really easy to get on there, and read the conversation checklists for your doctor visits, and watch the videos. They're just very easy-to-digest, simple messages. They don't speak at you; they speak to you. There's a lot of thought that goes into your treatment plan and what works best for you, so what we encourage people is to think about different aspects of that. It's not about You have to do this, you have to do that, because people are tired of that.

It's important as well because, when a person feels disempowered from talking about their treatment, a lot of times that leads a person not to adhere to their medication.

Right, and you know you have to keep up with your medication. A big part of being able to keep up with your medication is having a support system around you.

People always ask me, what would you say to somebody that's newly diagnosed with HIV? I would say surround yourself with people that you trust, and people that love you, and people that you love. That's the most important thing, because you might forget to do this, you might forget to do that, but they're going to remind you, because they want what's best for you. You might not want the best for you right now, because you're in such a lonely place, but it's necessary.

Is there anything else you want to share about tailoring their treatment plans, and managing living with HIV?

I did another interview recently in which the interviewer asked me that same question. My answer was something like this: You have to take care of yourself; you have to know that you're number one, you have to know that you're important. There's so much emotional content, living with this disease that it can get very distracting sometimes. It can feel like something's hanging over you all the time.

But it's OK to feel important. It's OK to take care of yourself. You have to hold your own hand through this a lot. But don't be scared; you're not alone. It's so important to communicate: with your doctor, with yourself, with your support system.

The interviewer said, "That's so much like the language that we were talking about and using in the HIv community in the '80s and '90s." And I told him, "You know what, the thing about it is that the treatment plans can improve, but living with HIV is not going to change anytime soon. This is just common sense. We're always going to have to know how to cope.

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This article was provided by TheBody.com.
 
See Also
6 Reasons Why People Skip Their HIV Meds
Word on the Street: Advice on Adhering to HIV Treatment
More Personal Accounts of Staying Adherent to HIV/AIDS Medications

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