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: That's such an important point. I think what everyone's saying is that there clearly are benefits when people do disclose over time, in the support that you get. But at the same time, there are times when it can add extra burdens. I think, particularly when people are in the early stages of dealing with this, that they need to give themselves time and think about: Is this supportive of me at this point in time, to share this news with this particular person in my life?
Because, as Michael was just saying, you're left with having to take care of them. And that may be fine when you're a little more stabilized yourself, but initially, that can be a little bit more of a burden.
Sherri Lewis: I was reluctant to be public. I was very happy to stay in a support group. I really did. I just wanted to be with friends and family, go to my doctor, go to my therapist, and cope. A woman was actually following me for several months. She had a grant to do a program about HIV. It was called "Passing It On," and it was a theatrical prevention education theater piece. That happened for a couple of years before I finally said yes, after I asked her, "Where does this go?" She said, "Don't worry. It's like public schools." We went to middle schools and high schools. You know, 8 o'clock in the morning assemblies. I thought, oh, this is great. You're really anonymous.
One day there was a network there. A local television station, unbeknownst to me, was recording the whole thing. Afterwards I said, "You know, I'm not public about this." And she said, "Well, it's so inspiring." But I said, "I'd prefer you not put this on the news."
That night, on the 10 o'clock news in Boston, there it was. It had my face, and her sound bite for two-and-a-half minutes over my story, which wasn't a full story, of course. It had my name: "Sherri L." Like, oh, that's helpful. I was absolutely horrified.
I called my therapist. My therapist called the woman and said, "You're lucky she's not suicidal. I mean, this is a terrible thing." And I really did go back to prayer again. And what is the meaning in this? I thought, maybe God is trying to tell me that it's time to be more public. Because I realized then, you can't be on a public stage and talk about HIV and then say, "But it's not public, you know, for public consumption."
So I ended up working with a writer on The Boston Globe, who said she would tell my story, complete. It hit World AIDS Day, the front page of the Leisure and Art section in The Boston Globe, called "Stage Fright." She did a beautiful job, writing this story. From then on, I met with the mayor in Boston, Tom Menino, and before I knew it, I was really, really out.
But, Sherri, tell me. Did you have good disclosure stories and bad disclosure stories? I mean, since going public?
Sherri Lewis: Well, public was wonderful. My neighbors were amazing. I lived in the same building for 12 years. I got notes under my door, and flowers, about, "We always knew you were a success. But not this kind of success."
"I encourage people, when they are considering disclosure, to think about who they want to tell and why and how it will benefit them, how it might cost them, and to make decisions accordingly. I think it's fine for people to tell certain family members and not others, just like in certain friendship groups."
-- Dr. Robert Remien
I found, as the doctor said: In my disclosure, I did not anticipate so much love and embrace. And that was my experience for all those years back East.
Sherri, did you also have good family reactions?
Sherri Lewis: My brother was not too great. My sister-in-law didn't want me in my hometown talking about it, because that's where they lived and they went to school. I didn't find it so great. Really, my support is through my mother, God bless her. And I have a niece that's been very active, in her early school years, with AIDS programs in her public school.
Dr. Remien, do you find that people will tell one relative and not another?
Dr. Robert Remien: Absolutely. Absolutely. I think the message is that people should feel they have permission to do that, as you're hearing in these stories. I think Sherri's given some great examples where it can be supportive, and it could be not so supportive. Unfortunately, even though we're 25 years into the epidemic, we still face that kind of stigma and rejection.
I encourage people, when they are considering disclosure, to think about who they want to tell and why and how it will benefit them, how it might cost them, and to make decisions accordingly. I think it's fine for people to tell certain family members and not others, just like in certain friendship groups.
Just to give an example, I've often heard people talk about an aging parent or grandparent. They say, "Well, I'm not sure what this person's going to do with the information. I don't need this person to know and I don't want to burden them. I'm just going to have to take care of their emotional reactions." So, sometimes they'll say, "You know what? There's no real good reason to tell that particular person."
Larry Bryant: I think it also takes a different level of thought process, when you're going down that list of who should I tell, and why. And who shouldn't I tell, and why. Because I think sometimes who we suspect might be the worst, who would take it the worst, turns out to be someone that is very supportive, and vice versa.
"Disclosure of HIV may also provide an opportunity to become very close to people. ... When you open yourself up and become vulnerable in front of others, there's a deep relief among people who see in you the chance to be, as Larry said before, human. I became closer to my parents and my sisters, and some other friends."
-- Michael McColly
I mean, in all reality, there are people that work in the field, who are trained at working with illness and disease, who sometimes have their own fear and stigmas that exist, that are openly present in just mere discussion. I've talked to people who have moved states because of a comment a nurse, or someone in their waiting room, has given to them, dealing with an HIV-positive person.
I think it takes a special kind of allowance on ourselves to not automatically label who to tell, who not to.
I think it's a very, very personal choice. But I don't think we should shut ourselves off completely. I mean, there are people who are diagnosed positive, who are HIV positive, who feel that they can only date HIV-positive people. That limits their own hopes, their dreams, and everything else beyond that. So I think it just takes an extra level of kind of a thought process, and of acceptance of ourselves, to be able to open up in that sense.
Michael McColly: I want to say, too, that disclosure of HIV may also provide an opportunity to become very close to people. This, of course, takes a lot of emotional energy. But we live in sort of isolation all the time. I mean, we all do, in various ways, in this country. When you open yourself up and become vulnerable in front of others, there's a deep relief among people who see in you the chance to be, as Larry said before, human.
I became closer to my parents and my sisters, and some other friends. Like Larry said, there's sometimes a surprise. There's a friend, or somebody you think will be really supportive, and they're not. Then there'll be another person that you think, "Oh, man, maybe that person ..." Then they turn out to be this deeply connected person to you. So it's a surprise, but it can be a beautiful surprise.
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This article was provided by TheBody.com. It is a part of the publication This Month in HIV.
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