Telling the Truth: An Insider's Look at Disclosure
There I sat in an HIV support group meeting in Hollywood, mentally patting myself on the back and realizing that, compared to the guy who was sharing his story at the moment, I was pretty together.
It was October 1992. We'd both been diagnosed about two weeks prior. We had come to the meeting at someone else's urging. In my case, the suggestion came from my doctor; in his case, the suggestion was made by his sister. She now sat holding his hand as he wept openly and vowed that he would never have sex again. Never. He looked about 25. Not an uncommon reaction for someone newly diagnosed with HIV, I later realized.
Poor guy had been infected by a long-term lover he'd thought was faithful. To make matters worse, the lover had known he was positive. What a way to discover that you're not in a monogamous relationship, and in fact trusting someone who feels no responsibility whatsoever for your safety. As he wept, I wondered why I felt so calm and removed. After all, I had been infected by someone who didn't disclose to me. Was I that strong? I should have known better.
Like most things, my calm was not to last. As my shock and denial faded over the following weeks, one of the horrors that began to weigh heavily on me was the burden of disclosure. I knew I wasn't like the young man in the support group. I couldn't imagine going a lifetime without ever having sex again. Why live!? Yet how could I ever go about telling a person I wanted to have sex and/or a relationship with that I have HIV? In my mind, I played out possible scenarios.
Oh yeah, you look hot too. I can barely hold back. Sure, I'd love to go back to your place. Let's hit it. Oh, by the way, that plague that's been spreading out of control for the past decade? I'm one of the latest victims. You sure do look hot though. There are plenty of safe things we can do. Are we still cool? Does it make a difference? Hey, where are you going? Come back! Thought so! See ya round sometime.
The scenarios always ended the same. A few years before, someone I was interested in had disclosed status to me. I reacted like a deer in headlights, staring in disbelief, then stuttering excuses and fleeing. I even got angry later. Surely, what comes around goes around.
Fortunately, after my diagnosis I was in no hurry to have sex again. For one thing, I was too busy reading and learning about HIV and AIDS, going to support groups, and initiating medication, diet and exercise strategies that I hoped would fight the virus and bolster my health.
About six months of exploring these strategies passed. It was also six months of stone cold celibacy. Sometimes I stood in the shower and cursed my genitals. Troublemakers. Other times I set aside an evening and dated myself. Dinner, a movie, then right to the good stuff. No disclosure necessary. Nobody does me like me.
But I wasn't just looking for sex; I also wanted companionship. You know, a relationship. Eventually I decided to try hooking up with other HIV-positives through classified ads. The people I met in support groups just seemed altogether too wrapped up in their misery for me to relate to. After all, I was still fairly young and mostly asymptomatic. I still had romantic ideals. Maybe answering some Positives Seeking Positives ads would be the answer, since the issue of disclosure would be beside the point.
Over the next few weeks I called and met some people over the phone, doing my best to balance matching interests and compatible personalities with some hint of electricity. Certainly, this is not as easy to accomplish in this manner as a good visual appraisal and ensuing conversation in a bar, which had been my strategy for years. But I gave it a try.
A month later, I had three attempted dates and three disasters under my belt, as well as a growing feeling that there is no easy way around disclosure. Meeting people with whom the only commonality was HIV status just didn't seem like enough to go on. True, I hadn't given it much of a chance, but I became convinced that I was going to have to test the real waters or become a priest. I would have to get back out there, cast my line, reel in a promising catch, somehow find a way to disclose my status, and then close my eyes and hold my breath while the other person reacted. Gulp. Time to take the plunge.
At first, I felt like "HIV" must be tattooed on my forehead. No one in the bars seemed to want to have anything to do with me. Did they all know? No one knew. I was acting differently.
I started concentrating on relaxing. It wasn't that easy. Initially I didn't talk to many people. Eventually I talked to more, but pulled back long before things got close to a proposition. After a while it got more comfortable, and I realized how naive I had been before my diagnosis. Looking around the clubs, there must have been hundreds or even thousands of HIV-positives out there on any given night, acting like nothing was wrong, hooking up with people and getting down, like all the other humans. I began to loosen up. I wasn't alone. Didn't I deserve pleasure too? I began to realize that I was becoming part of a community of HIV-positives who were still alive, young and yearning for the fulfillment we all seek.
Can we be honest here? Over the next six months I slept with several people to whom I didn't disclose. I just couldn't. I knew they would freak out, and I'd lose the opportunity to be with them.
I did use a condom, or made them use one. I didn't feel good about it afterward. In fact, I felt really bad about it. My self-image began to slip. While I knew that they hadn't asked about my status, and that a good part of the responsibility was theirs, I still felt deceitful.
What if the condom had broken? What if someone had become infected? Could I live with that knowledge? I didn't think so, but my need for human contact was strong. It began to scare me. Was I becoming part of the problem? I got into a cycle of one-night stands and no callbacks. The lonely life of a leper.
Finally, about a year into my diagnosis, I met someone. Electricity. This was what I had been waiting for. This one was for real. But how to disclose? By this time I knew that if I didn't find the guts to disclose before any sex happened, I wouldn't have the guts later. I'd lose the possibility of this turning into a relationship. It would be another one-night stand, followed by guilt and regret. No! Not this time.
I swallowed hard, and began. "Listen, I have something I want to talk about. Can we sit down somewhere quiet? OK, here it is. I just want you to know that I . . . you know, before we do anything that I . . . well, basically for about a year I've known that I . . ."
A gentle hand on my mouth. An easy smile of confidence and thankfulness. A quiet reassurance. "It's alright. I know what you're going to say. I was going to bring it up myself. You see, I have it, too." That one did a fly-by on me at first. Then the reality dawned. I began to grin right back. I finally did it, and it worked out better than I could have dreamed! This disclosure stuff isn't so bad!
Happy ending, right? Well, for a time, anyway. The truth is, with increasing longevity, many of us are outliving our relationships, like a lot of the rest of the population. With all of the health maintenance and treatment stress added to the usual relationship issues, HIV-positive pairings are certainly not guaranteed to be any more successful than any other kind of relationship. Two years and many therapy sessions later, I was back out on the market, ready to try again. And so I did, many times.
Now it's eight years later and I could write a book (or just an article) on my disclosure experiences. Some were successful, some not. Some opened the door to sharing pleasure within agreed-upon boundaries or even long-term relationships; others didn't. All were growth experiences. All left me feeling that I had done the right thing. Reactions of those I've disclosed to have ranged from casual indifference to tears and terror.
Only in rare cases has anyone reciprocated with their own disclosure. One of the things that scares me now is how many people seem to want to head disclosure off at the pass. They often stop you before you can talk about it, and refuse to divulge their own status. Let's just get to the good part. No. This first, and then only safer sex or no sex at all. End of story.
Have I always maintained that resolve? Can we still be honest? None of us is perfect. I'm no exception. The desire to be with someone who's attractive is one of the most powerful of human urges. It ranks right up there with familial love and spirituality.
When you're in the moment and on the verge and realize that disclosing your status is going to throw a monkey wrench into the whole deal, it's pretty difficult not to rationalize and shrug off the responsibility, especially if the other person doesn't seem to care. Trust me, they do care. They may not know how much at that moment, but if each of us who are HIV-positive think about how we felt when we were given our diagnosis, we know that even the most seemingly casual and carefree will care plenty when it affects them directly.
When I was diagnosed, part of what I found out was that someone I met didn't care enough about me to let me make an informed choice. I might still have gone through with sex, but I definitely would have insisted on a condom. That should have been my choice.
Why didn't I ask those questions? Why don't many people ask me? Why am I forced to blurt out information that often seems unsolicited and unwanted? Most importantly, why do I even bother?
The only real answer I can give relates to self-esteem. Before I developed the skill and confidence to disclose to potential partners, I was left feeling dejected and worthless by my inability. My view of myself as an honest, caring person was hard to reconcile with my behavior, and so I began to feel worse and worse about myself.
Guess what? The more a person's self-esteem spirals downward, the less likely they are to make constructive choices for themselves and their partners. It's a vicious cycle.
On the other hand, the more I've become comfortable with disclosing, the better I've felt about myself. Sure, some people run. Those people need to examine their own motivations if they want to stay healthy.
As for me, the more I follow through with disclosure and safer sex, the more I know I'm part of the solution, not the problem. That feeling empowers me. I hope it empowers others.
Flash to the present. Recently I met someone -- immediate sparks. Head over heels. Wow, things are moving fast. Better get with the program and disclose, I thought. Before I could open my mouth, I was beat to the punch. In one slightly nervous but to the point statement I was given HIV and STD status, plus a warning that only safer sex would be happening. I'd been scooped! But the nice part is, it made me feel so cared for. What a great way of saying how important someone is to you. There's hope after all. We humans can learn new tricks. We can be part of the solution.
Buddy Akin is a health promotion specialist in AIDS Project Los Angeles' Prevention Program. He can be reached at (213) 201-1515 or by e-mail at dakin@APLA.org.
This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).
This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.