After testing HIV positive: An open letter to Manny

After testing HIV positive: An open letter to Manny
Dear Manny, Thank you for sharing with me your news, even though of course the moment does not seem great. I am moved and honored that you trusted me enough to tell me you were just diagnosed HIV positive. And while I’m sure it seems the sand has been pulled out from beneath your feet like a rush of tidewater leaving the beach, and that everything has changed, in reality, at least between you and me, nothing has. Don’t panic: as the sea rushes out, you can lean on me until you are strong enough to steady yourself, to get your bearings back. You will. That, I know. You are still my friend. Don’t think you are thought of less, or differently. Across the miles, I can offer you only that. While I’ve known many with HIV/AIDS, I cannot begin to understand what it is like to hear that news myself. So I cannot pretend I know what it feels like to be in your shoes at this moment. This is a new chapter, certainly. You might feel like you’re in uncharted territory, without a map. But you’re not. People have come this way before. Many have cleared a path so your journey is easier, or at least with fewer thorns and shadows. To offer you strength, I turned to exactly those people: those I know who have a much better idea of what you are going through. Each I asked was eager to help, to offer support, to lend wisdom, extend a hand. You may seem alone, but you have entered into a strong and powerful network, full of information and sympathy and remarkable energy. In this network, vibrant, informed, productive, and extremely compassionate men. Their response to me, on your behalf, proved just how much so. What did they all want you to know, never meeting or knowing you?
Without fail or hesitation, they wanted you to know that while your life has changed, it is far from over. Dab Garner, creator of the international AIDS Ambassadors of Hope program, and the man behind Dab the AIDS Bear, elaborates: “There are people like me who have been living with HIV for over 30 years and with AIDS for over 20 years. With the medications we have today, it is possible to live a normal life, barring the medication side effects.” Says talented friend, videographer, community advocate and VJ Barry Browder, “This year marks the 20th year that I’ve been living with HIV. Back then it was almost like a death sentence. Now, it’s very manageable.” Jeffrey Newman, writer, advocate and social media master, agrees. “He has a greater chance of being hit by a bus or run over by a herd of cows than dying from HIV,” says Jeffrey, with his signature mix of candor and wit. And, he adds, “I’m also healthier now then ever.” They wanted you to know you are not a victim. “That word,” says Jeffrey, “should not be part of his vocabulary.”

The Strength of Knowledge

It also seems, like in every facet of life, knowledge is power. But when faced with a new diagnosis, Jeffrey realized what he thought he knew suddenly wasn’t enough. “All the knowledge I thought I had about HIV was nil compared to what I needed to know. I had to become a resource of information and knowledge, strong and hopeful.” Part of that quest for fact and information led Jeffrey to do what these men all seemed to do: find a way to channel their status into creative, and creatively supportive, endeavors. It led Jeffrey to create “HIV and AIDS – Get The Facts – Curb The Ignorance – Proving It Gets Better,” a Facebook page that acts as a virtual support group, and a vehicle for sharing new medical, political and social developments, in an atmosphere free of judgment, and in the spirit of true camaraderie. AIDS Activist Mark S. King, prolific author on the topic, Bilerico contributor, and the highly human and engaging voice behind the video and blog My Fabulous Disease agrees that knowledge is key. “He is now entering a world of patient education and empowerment. He’ll have to get educated and then know that many decisions will be made together with his doctor.” One of Mark’s go-to sources is Mark spoke, too, of the early moments of medical reality. “His first blood results will probably suck, which is normal, because the virus hasn’t had anything fighting it. Never fear, once meds get in there, the virus will wilt and his numbers will improve dramatically.” Although his first thoughts were practical, and medical, the personal impact of the news is not lost on him. “It’s a time to own his feelings about it without others trying to define them, i.e. ‘oh, it’s not as bad as it used to be’ when, in fact, this is a significant diagnosis. If he wants to freak out about it for a while, that is his right.” But, he adds, “His freak-out time should have a stop date.”

Personal Circles, Second Opinions

Barry thinks that care and information are critical, and just like in personal circles, the right relationship is everything. “Find a doc he trusts that has his best interest at heart and listen to what they say. It never hurts to get a second opinion on the treatment that his doc sets up just to be sure everything is in check.” Dab points to community resources worth seeking out: “I would tell him to educate himself about the virus, the medications, treatment options and if needed, Ryan White Services in his area.” It’s not only medical support Dab encourages. “I would also tell him to check out his local AIDS service organization where they could put him in contact with the local HIV/AIDS support groups. They can be of huge benefit to someone newly diagnosed.” Barry agrees that it’s more than just medical needs that need to be attended to. “It also helps to have family or friends around you for unconditional support.” But the men acknowledge that’s not easy, or automatic. And while you have chosen to share your news with me, (which I consider a great gift of trust) who else to tell, and how to do it, will be a personal journey.

Full or Partial Disclosure

Disclosure, whether to partner, friend, boss or parent, needs to be on a case-by-case basis, with the possibility of both good and bad reaction. When Jeffrey shared his status at home, “My parents sought the info out and curbed the ignorance. They were amazing.” But as much support as you will find, there will also be ignorance. And it will come from strangers, friends and even family. Says Jeffrey, “My ex-boyfriend’s parents were clueless. For Thanksgiving his sister called me to ask if she needed to have separate silverware and cups to keep her kids and family safe. That was 2001.” Wisdom hasn’t always come with time. Jeffrey talks of a 27-year-old positive friend, “His gay twin brother told him he is an abomination and disgraced the family. The mother thinks you can catch it from sharing a glass. That was 2011.” Sometimes it seems, too, that ignorance hides behind denial, or lack of education. Says Jeffrey, “I have a heterosexual couple living next door. (The husband) said he doesn’t know anyone with ‘the AIDS.'” Jeffrey and his boyfriend live in Manhattan where, like most major cities, chances are good he does, even if you take his current HIV positive neighbor Jeffrey out of the equation. As far as more personal disclosure, Jeffrey is “not an advocate about going down your list of sexcapades, because in 2012, adults go into sex encounters knowing the risks. That’s a personal choice. Here on out though, he should tell people he’s having sex with his status.” Mark knows that’s easier said than done. “There is stigma and the job of disclosure to potential partners… that takes fortitude, certainly, and time to accept his own status.” What about professional disclosure? Jeffrey thinks it’s a non-issue. “He’s not likely to get sick if he gets on meds. HIV is not a barrier to how professional he keeps things or how well he does his job.” There seemed also to be an unspoken urging among the men that in professional circles, cautious discretion remains key, since stigma and prejudice in the workplace still wholly exist. “There is no reason to go public there if it could be an issue.”

Seeking Support, Addressing Stigma

But in professional secrecy, there runs the risk of personal isolation. “That’s why close friends and family support is important (and maybe support group help), so he doesn’t come emotionally apart at the seams,” says Jeffrey. Like Barry’s advice about doctors, Jeffrey also encourages second opinions. “It can never hurt to check out a few support groups to see if they are right for him or not. Each one is different. The vibe is different. The people are different.” Whether there is more stigma, now, for an adult man being diagnosed, than there used to be, even as the overall stigma of the disease has waned somewhat in many circles, is up for debate. “The shock or questions about ‘Shouldn’t you have known better?’ will be there no matter what. If he were younger, people might wonder how could he not know better in 2012. The answer to this is simple: it’s no one’s business or place to judge. He owes nobody any apology or explanation. The only person he is accountable to is himself. Once he shakes that burden off and stops having to explain himself, the weight of that will go away.” And Jeffrey knows of what he speaks, personally. “After I tested poz, my sister came to visit. She said she needed to know how this could happen. Here I was a crusader of safe sex, chair of AIDS Walk Miami, a fundraiser… and she had to know in order to deal with it. I was like, ‘Say what?’ I was pissed because it was none of her business. This was my thing. She just needed to love me. I owed no explanation. He owes no explanation.” Mark adds about your new status, “Know that it doesn’t define him.” That seems to be a recurring theme: that your diagnosis is a fact, something you can own, but not necessarily an indelible label or even, eventually, a burden. Adds Jeffrey, “I don’t see HIV as being a bad thing. It has been very liberating and made me a better person.” And to Jeffrey, keeping nothing hidden was key. “One of the blessings about being open since I tested positive almost 11 years ago is that I have been able to show that it gets better and be a light of life.” It seems from all these men, attitude is everything. Says Jeffrey, “He is HIV positive. If he doesn’t act like there is shame in it, they won’t. But he can’t be worried about what others think. He needs to worry about himself. Only time really gets you past that.”

“A purpose or a will to live is also crucial. My will to live was: ‘No one is getting my records!!!'” chuckles Barry, recently married to his partner, and with a twinkle in his eye that rarely wavers, even when he speaks of the initial reality of diagnosis: “It is devastating when you find out, but after you get through the initial shock, you pick yourself up and get on with your life.”

A Living Legacy

Regardless of diagnosis, you (like all these men) deserve to be happy, the way I know you to be, the way I know you can: big goofy (handsome!) grin, heart even bigger. Don’t let the diagnosis strip your spirit.

And while I have many, many friends who have lived positively for decades and still do, I have lost many, too. Your living a full, productive, fulfilling life is how we help honor the many we lost along the way, through the years, long before meds, open dialogue, social media and social progress have paved a smoother path. Promising to do your best to do so is the only thing I ask of you.

Finally, thank you. Thank you for trusting me. Thank you for honoring me with the faith that I will honor your confidence. Thank you for giving me some of the weight of what you carry so that you carry a little less.

When speaking to these men, all of them ended the conversation with, “If he needs anything else, let me know.” And they meant it. You are among friends. Some you haven’t even met yet. And one you have.

This piece was originally published on Bilerico in 2011.

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