Did you make a conscious decision prior to auditioning to be on Project Runway to publicly disclose your HIV status on national television?
Not exactly. The production team does an extensive background check on all of the designers and they knew about my status. I had already been HIV positive for 18 years at that time and I was totally comfortable talking about it. I told them I would talk about it and I figured they would probably bring it up, which they did. I was happy to talk about HIV because in the last decade it had gone back in the closet and a lot of people feel isolated. I was happy to be a role model for people to show that I was not ashamed of my HIV status and that I was a happy, healthy, successful person.
We really need to start talking about HIV again in a real way and not just on World AIDS Day. Every day is World AIDS Day. It doesn’t go anywhere the other 364 days of the year.
Jack, you have been positive for 24 years and fortunately treatment and support have come a long way since then. If you could share just one piece of advice to someone that has just found out that they are HIV positive what would that be?
Find a doctor you like and get on treatment early. In the past it was common to wait to go on treatment until you T-cells dropped below a certain number or your viral load spiked. The reasoning behind that was that why take medication that you don’t need that may possibly be toxic. Obviously I am not a doctor but I know a lot about HIV. Now the medications are so much better and the side effects are minimal plus there is a lot of evidence that early treatment has multiple benefits.
Furthermore if you are “undetectable” consistently –which means that when you blood is tested they cannot detect the virus—you are virtually non-contagious. That is huge. So hypothetically if EVERYONE got tested for HIV and every positive person got to an undetectable status the transmission rate would drop to zero. Unfortunately the transmission rates have not declined so obviously that information is not getting out there.
I would also tell them not to freak out. Don’t internalize the blame and shame and stigma that are associated with HIV. It’s not productive. If your health is good when you find out then, honestly, your life probably isn’t going to change much. You might see the doctor more often and take a couple pills a day but that’s about it. If you are struggling emotionally, reach out to a peer or a counsellor or someone like me for support.
While I was researching you I read somewhere that you had lost a partner to AIDS in 1996. You stayed by his bedside for three weeks solid, which lead to you almost having a breakdown, understandably. How did that experience impact you?
I was just talking about that recently to a young friend who is HIV-positive but is only 27. He was asking me what that time was like. I actually consider myself pretty lucky. Greg was amazing and died quickly. I had a few other close friends die as well but I know people slightly older than me who only have one or 2 surviving friends out of 30 or 40 people.
Personally, living so closely with death all around and in my face and possibly chasing me—I developed a very interesting perspective on death and dying. I think a lot of people did at the time as a way of coping. I now see death as an integral and fairly insignificant part of life. I don’t mean to sound cold. But we are all going to die. You need to enjoy people while they are alive. Of course we will mourn the loss and miss them and grieve, but I am very pragmatic about that subject. Plus I am an atheist so I just think we are advanced organisms who live on this earth—try to do something amazing—and then move on to make room for the next people.
In your YouTube “letter to HIV”(http://www.youtube.com/watch?v=KGzAzgwIzdc) you spoke very optimistically about being HIV positive and how it has empowered you, made you a better man, and presented you with many amazing opportunities to share your story and be a role model for others around the world. You also mention that you’re helping to combat the stigma that surrounds HIV by being a visible, vibrant, sexy person living with HIV/AIDS. What would you like to say to those folks with HIV struggling to find their own way in the world?
I informally counsel a lot of people from around the world via Facebook and email and a LOT of people still really struggle with the stigma and the fear of being judged—or feeling dirty or less than. I can’t stress enough how damaging that is to one’s core feeling of self worth. You need to work every day to reject the blame and shame that you did something wrong or something to deserve this disease. That’s bullshit. You were just being human. HIV just happened. Countless other people have done the exact same behaviours and do not have HIV. So let go of all the shame.
I have 24 years of experience, but I literally don’t give any more power to my HIV status than I do to the color of my hair. I embrace all aspects of my being with all my many imperfections. We are only on this earth for a very short time so why spend any energy worrying what other people think of you. We are all equally valuable regardless of sex, sexual orientation, HIV status, race or any other attribute.
For more information on HIV Equal visit HIVequal.org. HIV Equal is supported by World Health Clinicians. For more information on Volttage visit Volttage.com or Vottagebuzz.com. For more information on Jack Mackenroth find him on Facebook or follow him on Twitter @jackmackenroth.