This Month in HIV: Tips and Tricks for Coping With HIV/AIDS
A Psychologist and Three HIV-Positive People Share Their Wisdom
Dr. Robert Remien: I think all these answers are wonderful. What you hear is, you hear commonalities across people's stories. But it's also for listeners to realize that they will have some of their own, unique emotional responses, as was just reinforced by Michael -- that there's a range of feelings that people have and people need to give themselves permission to feel whatever they feel, and to give themselves space and time to feel those feelings. You can also see that people find support in different ways. So people need to think about what works for them.
But the important thing is that they not isolate themselves, and that they do reach out to others and realize, again, as everyone has told in their story, that this is a lifelong thing that people are dealing with. But they do regain hope. The human spirit is amazingly resilient. People need to know that, no matter how they feel in the beginning, they will be able to live with hope and a good quality of life, and just know that that will happen with time. But they need to find the support that is unique to them.
I want to talk about another thing that is very important. That's telling others about your diagnosis. If we would imagine the weeks and the months after testing positive are rough, another rough moment comes when you have to tell others, because you're kind of reliving your diagnosis all over again. So, Dr. Remien, how do you counsel people to tell others? And when do you think is a good time to speak to others about your diagnosis?
Dr. Robert Remien: Well, what you first said is absolutely true, that people do relive their initial HIV diagnosis when they go through disclosures in different contexts, in different places. It brings up all those feelings, even if it's 20 years later.
I think the theme you'll hear from me is, these things happen over time, and they happen in specific contexts. One size does not fit all, and there's no just one rule on disclosure. Disclosure is important so that people aren't isolated. But people will need to balance the cost and benefit of disclosing in certain contexts, and thinking about people's need to know versus their right to know, and their need to know my diagnosis.
So, people need to be given permission to disclose at times, and at times, not to disclose, because it's a private matter. So timing depends on the context, the person, and the environment in which one is disclosing. I think for a lot of people where it's very, very challenging, of course, is in dating and intimacy, and in relationships.
"Now the very graphic and public deaths that we see on the front of newspapers and magazines, and heard about back in the 80s and early 90s, don't exist anymore. But what we have are people who die an emotional, a spiritual and a cultural death, long before the physical one comes. Just to stay afloat, just to stay sane, just to stay healthy -- and for the most part, just to stay human -- it takes a lot of energy just to keep that sanity, and try to develop our own coping tools, if we have them, if they're available for us."
-- Larry Bryant
But I always say that HIV is just one characteristic of a person among many that intimate people get to know over time. So it really depends on the specific circumstance.
With disclosure can come a lot of support and a lot of benefits, but people also need to be aware that they are opening themselves up to vulnerabilities, such as rejection and, unfortunately, discrimination, in some contexts.
I want to ask you, Larry, a little bit about disclosure, because I know you were silent for 20 years before you decided to disclose. And I read something you wrote in which you said, "Silence takes a lot of energy." I thought that was interesting. I was wondering if you could talk about that.
Larry Bryant: It was five years after my initial diagnosis. It was five years before I told anyone. The first person I told was my mom. It was kind of a relief. I don't remember everything about the moment, because I completely let it go. And the energy that it takes to ... Well, it depends on where you are. I mean, we're talking about the stigma and the fear and the ignorance that surrounds this a lot of times, and it comes in different shapes, forms and sizes. The world we live in ... I attended a predominantly black, historically black university. I was playing football at the time. I'm straight, and I was diagnosed at a time when even the CDC [U.S. Centers for Disease Control and Prevention] came out and said it was a gay disease, predominantly in white communities.
So my own absorbing of that: It took energy to do that, itself. Even now, in 2007, about to be 2008, in communities, whether it's me or anyone, disclosing your status automatically opens up the topic of: OK, is he gay? Or, how? Or, what happened? What bad happened? What did he do? What did she do? A lot of that -- before we even disclose, whether it's in a personal setting or, in some cases, where you're doing public speaking in a group setting -- you know, there's still that interior mechanism that's in my head that kind of relays, that kind of goes out ahead of the conversation, and kind of tries to see if I can predict what the reactions of people are going to be.
And being a black man, and being positive, I think, is unique in the sense that being a black man, there are all the other stereotypes and discriminatory types of things that even we place on ourselves. Just, for example, a couple of weeks ago, we all know Sean Taylor, the football player, got shot. I had a discussion with someone and we're thinking, well, a black man, an employed black man, in bed, in his own bed, alone at 2 o'clock in the morning is shot. The first thing that the media and everyone asks is, "What did he do?"
So that mindset exists in the same way with HIV and AIDS when we're diagnosed. Now the very graphic and public deaths that we see on the front of newspapers and magazines, and heard about back in the 80s and early 90s, don't exist anymore. But what we have are people who die an emotional, a spiritual and a cultural death, long before the physical one comes. Just to stay afloat, just to stay sane, just to stay healthy -- and for the most part, just to stay human -- it takes a lot of energy just to keep that sanity, and try to develop our own coping tools, if we have them, if they're available for us.
Larry, five years after your diagnosis, you told your mom, and then you came out publicly after 20 years. What was that like? And why did you decide to do that?
Larry Bryant: Well, the goal wasn't to necessarily come out publicly. I didn't aspire to be on a magazine, or all these things that I've been on at this point. The ultimate message we want people to have who are newly diagnosed, who are long-term survivors, who are -- and still, again, in this two, almost three, decades into an epidemic -- who are still much more willing at times to die at home, behind locked doors, under their beds, then to live one day as an HIV-positive person, is just that. I don't want to come out. It wasn't a thing of me coming out with a megaphone and saying, "I'm positive; look at me." It was a sense of: Yes, my name is Larry Bryant. I'm HIV positive and this is my message. And this is my life. We, as HIV-positive people, have to be the ones that address the idea of stigma and fear.
You can't legislate anti-stigma. You can't mandate antidiscrimination. I mean, you can. But you can't. Morally, if it's not happening, realistically, it's not going to happen. So we have to be the ones that take a part, take a hold of our own life. We have to swim. We have to swim because the life raft isn't always going to come when you want it to. And it may not always look like what you hope it to look like.
So it was just my way of kind of regaining consciousness. Being flatlined for over 10 years, and kind of having that silence of being scared to speak, being scared to disclose, I had to restart my heart, restart my life, by just being me. And a part of that means being an HIV-positive black man living in America.
Wow. Michael, can you talk a little bit about disclosing, and when you first disclosed to people?
Michael McColly: I just want to say that Larry's story is very inspiring to me. You sound like you have a lot of wisdom. I think that it's a hard journey. I think that sometimes we look back, and we tell the story easily, but it's a painful, step-by-step journey. And trying to be yourself, as Larry said, is really very good advice.
It was hard for me to disclose because I hadn't dealt with my sexual life. So that was kind of a double thing going on. As I'm sure Dr. Remien would agree, when you do disclose to people, family, friends or in a public place, as Larry was talking about, you are addressing people's fears, their deep fears. And in my case, it was fears about sexuality. It was obviously fears about illness, fears about death, fears about stigma.
It is a social disease that we are responding to, as Larry so eloquently said. We have to be conscious that when we are talking to people, there's a lot of projection on us and that can be doubly hard.
Just like people who deal with cancer, diabetes or anything else, when they tell people about it, they have to be prepared for the emotional responses of the people that they tell and that can be a double shock. That can produce anger and sadness. Because here you are going through all that you're going through, and then you're actually feeling physically the kind of fear and emotional response of the person, or the group of people.
I've spoken around the country, with my book, and people come up afterwards and they're crying about the fact that they just found out about cancer, or anything. Because they see you as this person who has gone through a lot.
In some ways, my ego is massaged. But on the other hand, I had to -- and still have to -- cope with all the emotions that come towards me. I'm sure Sherri responds the same way, with performing and being out there, as kind of a symbol.
We have to find ways to keep ourselves sane, like Larry was saying. Because it can be traumatic to sort of embody other people's fears. So, watch out. You have to keep building yourself up, and find ways to keep yourself sane, and not take on the world -- which I have tried a few times.
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This article was provided by TheBody. It is a part of the publication This Month in HIV.
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