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This Positive Life: Reality TV Star Talks About Living With HIV and Fighting Stigma

An Interview With Jack Mackenroth

November 16, 2008

This podcast is a part of the series This Positive Life. To subscribe to this series, click here.

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This is Olivia Ford reporting for The Body. I'm here today with Jack Mackenroth. You may know Jack from his time as a contestant on Bravo's design-competition TV show Project Runway. You may not know that, in addition to being a gifted designer, Jack is also a committed HIV advocate who has been living with HIV for almost 20 years himself. Today I'll be talking with Jack about living with HIV and being open about his HIV status on reality TV.

Welcome, Jack, to This Positive Life!

When did you find out you were HIV positive?

I found out I was HIV positive through a doctor's visit when I was 20 years old. I had some symptoms I was concerned about. That's how I found out.

Jack Mackenroth

About Jack
Home: New York City
Diagnosed: 1990


"By the time I got on Project Runway ... I was so comfortable being HIV positive and being open about it ... that I didn't really even think twice," says Jack Mackenroth, a former cast member of the Bravo network's fashion-design reality show. The fact that Jack has been living with HIV since 1990 is old news to Project Runway fans. Jack was 100 percent open about his HIV status, even while living in the fishbowl of reality television. Now Jack uses his high profile, and his design expertise, to fight HIV stigma.


To watch a video of this interview, click here.

What year was that?

That was in 1990.

What was the first thing you did after you found out?

In 1990 there weren't a ton of options, so I did kind of freak out for a little while. I remember having a little bit of despair, knowing I was probably going to die soon. What are my options? What am I going to do?

Shortly thereafter, probably after one or two years of just figuring out the climate -- what my options were, that sort of thing -- I found a great doctor and then from there the discussion started. I got on a treatment regimen and it worked out from there.

Do you still have the same doctor now that you had then?

Actually, initially, I started with one doctor who was a specialist -- there weren't as many HIV specialists as there are now, obviously -- and then I found the doctor that I have now and it's been great since then.

Can you talk about some of the ways that you became the self-aware, healthy, content person you are now?

Yes. Just as with anyone who finds out that they're positive -- especially with the stigma that still surrounds the disease, unfortunately -- I had some depression, thinking I wasn't going to live very long. I was only 20, 21, 22, dealing with all that and living in New York. There was a lot going on in my life. But I found a therapist who helped me with a lot of issues. Once my health started to stay fairly good, my mental state improved as well.

With all the stigma and discrimination around HIV, what made you decide to be out about your status in such a public forum as Project Runway, knowing that that might bring a potential negative into what could be the most positive experience that you'd had in your life so far?

Since I was diagnosed so long ago, in 1990, I think that by the time I got on Project Runway, which was just last year, I was so comfortable being HIV positive and being open about it and I'd been open about it for so many years that I didn't really even think twice about hiding my status.

To me, I'm so comfortable with it -- as I hope that everyone will get to be. It's like, "Oh. I have brown hair. I have blue eyes. I'm HIV positive." That was my thought about it. I knew that the viewing public of Project Runway would have a larger reaction than I was having in my head. But I knew I could do good work coming from it. To me, that was more important.

I just live honestly. It's what I do.

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Have there been any repercussions from being such a public HIV-positive person? If so, what have they been?

Generally, I would say 99.9 percent of the responses have been supportive and outreaching: people e-mailing me saying thank you so much for being a role model or asking me questions about HIV and how they can get resources, people from other countries.

There have been a few unstable people out in the world who, for various reasons, think that I deserved HIV, or it's God's punishment -- all the wacko stuff that you get.

I know those people are out there and I was actually surprised that there weren't more of them, to be honest. So, yes, generally it's been a really positive thing.

How do you respond to people who stigmatize HIV-positive people?

I believe that no matter what you tell that group of people, it doesn't matter. They're not going to change their opinions. It's not logical and it's not rational. They think it's a punishment from God or they think whatever their crazy thoughts are. I just don't think that their minds are going to change too much.

We're talking about your public face as the result of Project Runway, but in terms of the intimate space of being on the show: There was a lot of love and support among the cast members; but when the camera was off, did you experience any stigma or ignorance from any of the other cast members, living in such an intimate space with strangers for such a long time?

That's a good question. Actually, not at all. In our contract, there was this whole disclosure: "We have not tested anyone for any diseases, period, so you know going full well into this that that's the situation." Also, not that HIV is a "gay disease" or a "gay male disease," but a lot of the other cast members were gay men familiar with HIV, and everyone was really cool.

The only concern was when I contracted the MRSA [methicillin-resistant staphylococcus aureus]. That, actually, is very contagious. We're working in close quarters, so that did become an issue and that was a concern of mine as well. I didn't want to endanger anyone else.

But the HIV thing was like, that's cool. Actually, people praised me. Quite a few members of the cast said things like, I really admire your courage for coming out about that, it's so great. So it was a positive experience.

How did you decide to start doing activism around HIV? Had you been doing it for a while, or is it something you came into when you became more visible?

I definitely became more of an activist as the visibility increased, but it is something I've always done. I've delivered food to homebound people with AIDS. I did that when I lived for a year in Atlanta. I've done that in New York City. I swim on a swim team that does a benefit once a year to raise money for some local AIDS organizations in New York City. So I have been actively involved.

In the early years, I benefited from a lot of government-funded programs. ASD [Adult/Adolescent Spectrum of HIV Disease Project] helped me a lot. I was a kid struggling in New York. I think it's important to give back. Now that people are actually listening to what I have to say, it's an even better platform to distribute a message.

What do you think it would take for other people to feel empowered to be public and out about their HIV status?

I think that it's getting the ball rolling, which is what we're doing through the program Living Positive by Design as well, which we'll talk about later.

Once one person talks about HIV and then another person sees that person talk about it and feels comfortable and says, "Oh look, they're just living their lives," there's no judgment about it. Hopefully you just keep delivering the message: It's not a moral judgment. It's a disease. We aren't our disease. We're just people managing our lifestyle and managing our disease as best we can and living a full life.

What are you up to now? What sort of work are you doing in terms of design and in terms of activism?

I'm working on a really exciting HIV/AIDS educational campaign called Living Positive by Design. That's in partnership with Merck. We're doing some city tours, partnering with local AIDS organizations.

The key message is combating the stigma that surrounds HIV. We all know that when people have fear and shame around the disease they don't get the help that they need, they're not honest with their partners and their health care providers and their families. We encourage people to really partner with their doctor, have a really symbiotic relationship where they can be open in discussing that.

As far as the design front, I'm actually doing crazy stuff! Later on this month, I'm making a couture wedding gown out of condoms. I'm doing something called "The Chocolate Show" where I have to make a Wonder Woman costume out of chocolate and pastries. So I'm doing little design projects and then there might be a TV show in the works. We'll keep you posted on all that.

Yes, please do!

Yes, it's very exciting!

Thank you so much for all the amazing work that you're doing and for speaking with us today.

This transcript has been lightly edited for clarity.


This Positive Life: Jack Mackenroth (video)

This video was recorded at the 2008 United States Conference on AIDS in Fort Lauderdale, Fla.


Copyright © 2008 Body Health Resources Corporation. All rights reserved.
This podcast is a part of the series This Positive Life. To subscribe to this series, click here.


Related Stories

More Inspiring Stories of Gay Men With HIV


This article was provided by TheBody.com. It is a part of the publication This Positive Life.
 

Reader Comments:

Comment by: Leo (Taipei, Taiwan) Thu., Apr. 24, 2014 at 9:08 am EDT
Hello Jack, here's Leo. I'm 21 n I just found out HIV + abt a week ago.... I just want to tell u. thank u ~ cause after read this page, it made me fell stronger to live. I will keep myself better n better. thank u again Jack.
ur fans Leo Lee xx
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Comment by: renee (san jose ca) Thu., Sep. 12, 2013 at 7:16 pm EDT
My 21 year old son just found out he is hiv possitive .He lives with me and his father and we have 5 younger children .What are the risk for us in my home from my son infected with hiv ?
Thank you for reading my post.
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Comment by: renee (san jose ca) Thu., Sep. 12, 2013 at 4:30 pm EDT
My 21 year old son just found out he is hiv possitive .He lives with me and his father and we have 5 younger children .What are the risk for us in my home from my son infected with hiv ?
Thank you for reading my post.
Reply to this comment


Comment by: CRY (JOHANESSBURG ) Thu., May. 9, 2013 at 5:34 am EDT
HI
I FOUND OUT THAT I WAS HIV POSITIVE LAST YEAR ,BUT I AM GETTING BETTER DAY BY DAY .
I WANT TO DO THE CURSE OF HIV MANAGEMENT COURSE ,WILL YOU BE ABLE TO HELP ME WITH THE SUITABLE SCHOOL SO THAT I CAN GO AND LEARN
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Comment by: Ram (Queens, NYC ) Tue., Dec. 11, 2012 at 10:13 am EST
I was just told yesterday at the local std clinic that I had tested preliminary positive for HIV. OMG!!!! Secondary testing ordered. I am freaking out!! What do I do? I don't even have anyone to talk to.
Ram
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Replies to this comment:
Comment by: Nicole (Detroit, Mi) Thu., Dec. 20, 2012 at 6:01 pm EST
You are not alone. I just found out a month ago. I didn't really have anyone to talk to either but I found a good support group. It has been a great help!!! Having people to talk to that have or are going through this hard time is a God send!!!
Comment by: maryanne (staten island, ny) Wed., Jan. 16, 2013 at 5:48 pm EST
I found out in 8/11. Not on meds, but in 8/11 cd4 was 806, now 9/11..cd4 746. viral (8/11)..5600..now 200. i dont know what to do or have anyone to talk to. this is awful


Comment by: anthonylee (Nashville,Tn) Tue., Sep. 18, 2012 at 8:25 am EDT
Life is preciouse what ever the case may be... life gose on, when I found out that I was HIV positive I cried like a baby,I got over it got help and started educated myself about this illness.
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Comment by: Nicole (Detroit, Mi) Thu., Dec. 20, 2012 at 6:02 pm EST
Sounds like a plan to me!!! I found out a month ago and started seeing the doctor immediately!!


Comment by: andy (indonesia) Fri., Sep. 7, 2012 at 10:45 pm EDT
I was diagnosed 2 month ago..I got gastroenteristic problems and then I'm start taking the treatment by now..I'm getting much health..it's a big thing to dealing wit..for the rest of my life..but I believe the researcher and doctor will find the cure..
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Comment by: lucho (venezuela) Sun., Nov. 27, 2011 at 10:12 pm EST
where can i meet other hiv positives. i want to make a relationship with someone who is in my same situation...
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Replies to this comment:
Comment by: maryanne (staten island ny) Wed., Jan. 16, 2013 at 5:50 pm EST
Me too, i'd love to meet some people who are in the same boat as me.


Comment by: Ong (Malaysia) Tue., Oct. 18, 2011 at 10:17 pm EDT
Dear Jack, thanks for this great interview. I am doing social work on HIV/AIDS Preventive Education, and would love to have you in Malaysia! How do I get in touch with you thru email?
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Comment by: peng (phiippines) Sun., Mar. 6, 2011 at 3:01 am EST
its really difficult at first to be diagnosed with hiv, especially am working as a nurse who take care of sick people.. but eventually i dont have the immunity against it either, i got it through various multiple needle prick injury. at first i wanted to end up my life, but it came to a point that " hey, im not yet dead i still can continue living" now i got my friends and family for support.. though im single for now afraid of engaging to a relationship.. love will follow someday.. :)
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Replies to this comment:
Comment by: john (philipppines) Mon., Jul. 25, 2011 at 3:49 am EDT
Hi Peng,

I have also a friend who is a nurse,recently diagnosed with HIV,due to needle prick injury. I want to get in touch with you coz i want to ask how did u get along with it.What meds are you taking in right now. My friend is depressed right now and i need to be with him now that he is emotionaly unstable.Please Peng, you will be able to read this..

[Editor's note: We removed personal contact information from this comment for privacy/security reasons. Peng, if you see this message and would like to get in touch with John, please write content@thebody.com and we'll do our best to reach John on your behalf.]
Comment by: Cris (Philippines) Tue., Aug. 2, 2011 at 8:59 pm EDT
I will support you.=)
Comment by: Cody (NSW, AU) Mon., Nov. 7, 2011 at 10:58 pm EST
I'm a Filipino and needs your help too, if that's okay.


Comment by: Fernando (Rio, Brazil) Fri., Mar. 4, 2011 at 11:39 pm EST
I really like checking out this site every now and then. It truly gives me strength to carry on. I got to this interview after seeing Jack's video for Valentine's. One of my biggest, if not the only one, is to never find a partner again for I am positive. It does get lonely sometimes. But I'll keep living life to the fullest, and it's gonna be even happier if I find someone to share it with. Love for all.
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Replies to this comment:
Comment by: edna (SP) Wed., Mar. 9, 2011 at 10:44 am EST
yeah fernando, its the problem for me as well. Are you straight?hahaha
Comment by: Fernando (Rio, Brazil) Sun., Dec. 4, 2011 at 12:04 pm EST
Hi, Edna. I know, it must be an issue to many people. Well, no, am not straight... LOL. But we'll eventually find that special person, I am so sure about it! Love.


Comment by: eve (angola) Wed., Feb. 23, 2011 at 8:46 am EST
thanks for the comment im doing the same thing here in my country but is dificult i dont have much found to go on rural ares...but thanks any way. great job
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Comment by: adisu (adis ababa,ethiopia) Sat., Feb. 19, 2011 at 3:59 am EST
Thanks jack!,we need more people like you.
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Comment by: Anonymous Sun., May. 13, 2012 at 3:31 pm EDT
i know right


Comment by: karan (india) Fri., Feb. 4, 2011 at 1:59 pm EST
hey man. just wanted to thank you for the great job you are doing by inspiring ppl
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Comment by: tyoko-tyoko (cape town, SA) Sat., Dec. 11, 2010 at 6:30 am EST
Ja Jack thanks for the inspiration. I just find-out im HIV P, with my partner and she did CD4 count test 344 and im scared to check mine because i hate eating pills more especially for the rest of my life and im not sure what can you do to keep your CD4 count up, but thanks and if anyone can help me please help
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Comment by: gee (nairobi) Sun., Jul. 3, 2011 at 1:49 am EDT
You can improve on your oxygen intake and eat well. google oxone therapy


Comment by: yeison (colombia) Fri., Nov. 19, 2010 at 7:15 pm EST
hace un mes me diagnosticaron positivo, y comentarios como estos me dan ánimos, comencé medicamentos pero no me he sentido muy bien en dos semanas que llevo con ellos.
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Comment by: Ricardo (Argentina) Tue., Nov. 16, 2010 at 6:00 am EST
Hola Jack gracias por ser tan valiente. He leido tu historia muchas veces. Eres una fuente de inspiracion para mi. Tengo 28 años, he sido contagiado de manera intencional por mi ex pareja. Creo que las campañas no solo deberían estar orientadas a los serongeativos, A ESTE VIRUS LO ERRADICAMOS SI LOS POSITIVOS SOMOS HONESTOS, CUIDADOSOS Y SI TENEMOS AMOR POR EL RESTO. Es solo una cuestión de conducta, amigos es nuestro deber erradicar este mal.

Gracias Jack, me alivia mucho leerte. Un abrazo grande
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Comment by: Charlie (Indpls. In.) Wed., Oct. 20, 2010 at 2:47 am EDT
I hope they find a cure and fast. We have lost too many people to this terrible syndrome. I know I do not have it, I have been tested and etc., but I feel for others that do unfortunately. There are alot of ignorant people that need to be educated about Aids and not be afraid of someone that does have aids. It could be any of us. It is noone's fault either. That was sad about Ryan White.
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Comment by: ail (kuwait) Mon., Sep. 27, 2010 at 4:05 am EDT
i love you
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Replies to this comment:
Comment by: cc (new york) Sun., May. 13, 2012 at 3:34 pm EDT
i saw him first hahahaha


Comment by: sanj (trinidad) Thu., Sep. 23, 2010 at 9:36 am EDT
thank you jack. there is a possibility that i can be hiv+, but fear and anxiety keeps me from wanting to find out the fact about my status, i am in very much denial, but after reading your interveiw i am a bit more calm now..and are really thinking about getting tested soon

thank you!!
sanj
Reply to this comment


Comment by: Adrian (Cleveland) Thu., Jul. 29, 2010 at 6:22 pm EDT
In February 2010 I was diagnosed with HIV. I was infected recently and started medication because my CD-4 count was low. I am a 23 years old male and I have been very positive about this whole lifestyle change. At first I was depressed and confused about the whole situation. Thank to thebody.com and interviews such as this one, my transition as a positive person remains optimistic. Thank you to everyone who remains optimistic and active, you are inspirations for people who are newly diagnosed with HIV.
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Replies to this comment:
Comment by: Peter (California) Fri., Aug. 19, 2011 at 1:20 am EDT
I think I have HIV, and Im afraid to get tested. I refuse to have sex with anyone, but the depression is killing me. I feel sick sometimes, and I dont know what to do. I got exposed around March 2010, and everyday has been a nightmare. I think about taking my life daily. How were you able to be so positive about the whole situation?
Comment by: teapot (NYC) Fri., Aug. 19, 2011 at 3:39 pm EDT
@Peter: Please, get tested. There is no way but that to assuage your fear -- and to get into care if you do indeed need it. Read this: http://www.thebody.com/content/art58614.html

Good luck to you!

Comment by: lucho (venezuela) Sun., Nov. 27, 2011 at 10:16 pm EST
man. i want to meet you... i need to have friendship with hiv possitive... i cant be by myself know so many people around, that i dont know which one has it or not.


Comment by: jonathan (Atlanta, GA) Thu., Jun. 24, 2010 at 5:53 pm EDT
You know it's great that you are involved doing work in HIV awareness. I suppose Project Runway sky rocketed you to the forefront in the HIV community. It also helps to be incredibly handsome. God forbid anyone ugly have the same opportunities that you have had. Why else would you get to be the spokesperson for the day-to-day struggle most of us long term survivors endure? Most of us plain people living with HIV would love a little "self-promotion" too. Funny how HIV hasn't squelched your narcissism. I am 24 years into this shite and I have had a blast.
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Comment by: BHanu (India) Thu., Apr. 8, 2010 at 3:08 am EDT
God bless you all.
wishing best of health and times ahead.
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Comment by: Busi (South Africa) Sat., Feb. 27, 2010 at 2:39 pm EST
Thank you Jack for your inspiring story you realy lifted my spirit, I am a young lady who is 24 and was diagnosed on 21 April 2009 it has not been easy to deal with this HIV life I,m scared of death but one thing I know we all going to die one day but I,m trying to take things as they are I,m not on meds yet my CD4 count is 469 have never checked viral load!
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Replies to this comment:
Comment by: Gee (Nairobi) Sun., Jul. 3, 2011 at 1:52 am EDT
What are you doing in SA. there are so many doctors in SA who can assist esp with natural means


Comment by: ALEX (ATLANTA) Thu., Aug. 20, 2009 at 7:28 pm EDT
Great story. You are a beautiful person.
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Comment by: rick (portland) Mon., Jun. 15, 2009 at 6:25 pm EDT
Thanks Jack and everyone for posting.

I don't know if u ever have time to read this forum, but I wanted to add my very brief story. I was diagnosed HIV+ last week, as was my partner, after getting a test through a routine annual physical. It was out fist test since meeting over 4 years ago. We've both had all our tests done and are awaiting results. My CD-4 count is under 200 and I have a history of respiratory issues, even though you wouldn't know it...I look healthy, am active, exercise regularly and eat well. I'm a little freaked about my viral load and genotype, which I'm waiting for. To top it off we have 2 kids, a close family member fighting breast cancer and my partner had started taking meds for depression. Man, it all sounds so bleak, yet I continue to realize how lucky I am to have a home to get well in, a job, health care, a wonderful family and an amazing partner who is going through what I am...although our experience is completely unique.

Anyway, I wanted to thank you for being such a positive [no pun intended] role model for people living with HIV. Not only are you drop dead gorgeous but your soul seems as undeniably beautiful as the body God gave you on your earthly journey.

Thanks for being you and God Bless.

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Comment by: DJ (Tacoma, WA) Wed., Jun. 3, 2009 at 6:11 pm EDT
I thank you and people like you that put yourself out there and make the masses feel a little less scared. I was just diagnosed 1 month ago and still pending lab results from a speacialist concerning possible treatment. I'm still very nervous and wonder what's next. Right now just seeking info, and look forward to reaching your comfort level. Thanks again
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Comment by: joseph s (newark nj) Mon., Nov. 24, 2008 at 12:06 pm EST
I found out I was HIV positive in 2000. After coming to grips with that fact I went on living. I don't think we have to walk around with a sign on our backs and chest saying you have HIV. It is only important to those close to you and sometimes they don't have to know.
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Comment by: Sean UK (North West, UK) Sat., Nov. 22, 2008 at 3:52 am EST
I was diagnosed 2 yrs ago. A married man of 3 kids, I was curious about man2man sex, and was stupid for not being careful. My wife knows, and we're still together, for the sake of the kids. I really struggle with my status, and suffer from severe depression at times. I am extremely hard on myself, which some would say I should be for being so foolish, but I know it doesn't help my situation. I just can't seem to break the chain, and really hate myself at times. My health is good so far, and I'm not on meds yet. I have regular checkups (every 3 months) with my consultant, but always get 'moody' 2 wks before my results. I do find these forums very helpful though, and they do seem to calm me down.
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Comment by: Andrea Johnson (Philadelphia, PA) Fri., Nov. 21, 2008 at 2:30 pm EST
GREAT JOB, JACK!!! This is what we need more of: Persons talking about this epidemic, to help with this epidemic. Being an HIV+ woman, I speak out and am a LOUD MOUTH and I commend you for sharing your story. Andrea Johnson a/k/a Intrigue of the Black Butterflies. www.blackbutterflies.org
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Comment by: Michael (New York, NY) Thu., Nov. 20, 2008 at 4:07 pm EST
THANK YOU, Jack, for your bravery and for being such a great example of self-acceptance. I was diagnosed HIV positive just 2 months ago and I am dealing with so much fear and anxiety. But getting a glimpse of how comfortable and life-affirming you are is exactly what I need. You are inspiring more people than you may realize. THANK YOU. I am also grateful for a forum like The Body - it has been one of my primary resources for information and comfort since my diagnosis.
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Comment by: Doug (Knoxville) Thu., Nov. 20, 2008 at 2:37 pm EST
Jack,

I am so proud that you are a spokesperson for those of us who are long time survivors. Within the gay community I find so much stigma and shame, which only helps to perpetuate this pandemic.

Bless you, handsome, and please keep up the good work!
dsb
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Comment by: rory (London) Thu., Nov. 20, 2008 at 3:49 am EST
This is an amazing affirmation of people putting back into the community. Well done- we are working on an AIDS awareness campaign for the Middle East and Africa- and one day we will have a high profile person who will push our cause in this way.
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