THE BLOG

Putting HIV in Its Place (Part 1)

11/08/2013 08:58 pm ET | Updated Feb 02, 2016

Close to 2 million individuals in the U.S. are living with HIV, out of a population of 310 million! Our segment continues to grow at 50,000 a year, minus the 18,000 who still succumb to the ravages of AIDS. We come from all walks of life: rich and poor, white and black and Hispanic, gym rats and drug users, young and old. Despite the ubiquitous nature of HIV, the epidemic remains largely invisible. For that reason, many of us feel alone.

For those of us who are gay, we remember the time when we came out. For many, this was an incredibly empowering, cathartic experience. I call disclosure of my HIV status "coming out with none of the benefits." However, I found that putting HIV in its proper place in my life enabled me to move forward and was incredibly empowering. But I am not saying it was, or is, easy.

Two years ago my best friend since fourth grade (that's over 50 years of knowing and confiding in each other) visited me with his partner. He asked if I were on any medications at my now-advancing age of 67. I said "yes" but didn't mention which ones. I wrote John a long letter over Christmas telling him I am HIV-positive. I got this scathing email damning me to Hell and listing all the friends he had lost to AIDS. Fear. And in retrospect, I think fear of losing yet another friend. John, like so many, had no idea that being HIV-positive does not equate to death from AIDS. That was the end of our 50-year relationship. Through an email I just disclosed to an elderly cousin who is fairly liberal. She never responded.

The bottom line is that many individuals cannot handle the thought of being around an HIV-positive individual. We are still considered by many to be disease-ridden and infectious (hence the "clean u b 2" mantra that The Stigma Project is trying to fight), or totally reckless, which is the response of many of our gay health organizations and many in the medical community.

This is not like the stress of coming out, where often, after days, weeks, or maybe months of struggling to tell friends we are gay, they say, "I already knew! What's the big deal?" and/or, "Why didn't you tell me sooner? You are my best friend."

Disclosure can be met with cries of horror and damnation, literally -- but not always.

I became HIV-positive at 65. I told both my parents, really before I understood what was going on, as I was just a bit overwhelmed. My mom was 89, and my dad was 94. They both thought I was going to die and offered me my room at the old homestead to come home so that they could take care of me. Three months before my dad died at 98, observing me working for days with a chainsaw around his home, clearing brush for eight hours a day (and I was now 67), he said, "I'm sorry not to be more empathetic about your disease, but you just don't seem sick!"

I waited a year later to tell my sons. I had a terrible coming-out experience with them, as I had no idea what it was going to be like living as a gay man and beginning my life anew at 51. I wanted to be able to be comfortable and educate them about HIV and assure them that I was going to be OK. This discussion, although a bit upsetting to them, has opened up our relationship to new levels. In the midst of my parents' final months, my older son emailed me from Spain, "Dad, you need a break, hop a plane to Tarifa and go windsurfing and paddle boarding with me. I will pay for everything!"

I disclosed to all my parents' caregivers, as I was having really bad interaction with my siblings, and the stress was high. Anxiety and stress kill T-cells, the backbone of an already compromised immune system. The caregivers were kind, loving and supportive. I left for a few weeks, came back and was with my parents for most of their remaining days.

An example of what can happen from open disclosure follows. A few months ago, in Provincetown, I met this 61-year-old woman: straight, owns a laundromat in rural Ohio. She came to Provincetown for a month because she loves to meet interesting people. Believe me: If you want an eclectic, not-mainstream cross-section of the U.S. and the world, come to Provincetown! I came out to her. We had endless discussions about our lives: the loss of her husband to Lou Gehrig's disease, her volunteer work and hospice care. She is now carrying on this relentless campaign in rural Ohio educating her friends about HIV, promoting understanding, and speaking out about the fact that HIV is an epidemic in the U.S.