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HIV/AIDS and the Aging Population: What's Going On?

September 19, 2012

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Kellee Terrell: James?

James Masten: Another thing that I see in terms of screening for depression is that people self-report, "Oh, I'm fine. I'm doing OK." And it doesn't jive with people.

I participated in a large-scale study, where I was working with individuals and looking back on their depression evaluation, and finding out that they score depressed; but their self-report is, "Oh, you know, I'm doing fine. Doing great."

Frances Meléndez: You know, that being said, when you think about it, if your day-to-day activities are crappy and you kind of feel sad every day, it is what it is. You can't really pinpoint that you are depressed because this is your day-to-day living. It's struggling to pay the bills; struggling to do what you have to do.

The other issue with, when you look at the comorbidities, the substance abuse, HIV, domestic violence: that's just a history of trauma that correlates with risky behavior, the substance abuse. And mental health is so important. I mean, I think I'm so glad with the Act that those services will be in place. Because they really have been lacking. It's been very spotty, what's been available.

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James Masten: And the magnitude of loss that's faced by this community.

Frances Meléndez: Yes. This view exists for many survivors. You know, the 82-year-old who said, "I'm still alive. Why?"

Sean Cahill: Right. And there's also another issue related to this: stress related to disclosure.

Frances Melendez: Yes.

Sean Cahill: My former boss, Marjorie Hill, runs a group for longtime survivors, a support group. She's a psychologist. And it's basically African-American women who have been living with HIV for a long time. Many of them, they keep their pills in a vitamin bottle. They are terrified that they're sister is going to find out. And they're worried that they're not going to be able to, you know, have a relationship with their nieces and nephews if their sister finds out.

And the long-term stress related to that, where they can't even, they can't talk to somebody really close to them -- they feel that they can't talk to that person to get support for what they're going through physically, you know?

Frances Meléndez: Physically and mentally.

This is so common. Running a group with Latinos in Iris House, it took two years out of the four years that they were even able to say "HIV." They called it "the illness." They said to me, "Well, if I don't say it, it's not real. It's not real."

And it's powerful. Denial is powerful. And to live with the secret.

Think about the psychological stress. And Sean and James are talking about it. And I saw this over and over. I'm in the process of doing research, narrative stories of women with HIV. And I couldn't tell you. Out of all those -- you know, I interviewed 15 women -- four out of those women can't even tell their sisters, their best friends. And they just cried and said, "I can't. They won't love me the same." And they are involved in community advocacy. And I was shocked.

James Masten: And that's where the importance of support groups and forming and finding communities is so integral. And for so many people -- back to long-term survivors, or back to what that nurse said -- who think that we are not living in a crisis anymore. So if I'm living, HIV is just a part of me now. And I've accepted it.

To be conscious of all the things we're talking about, and to think, "But I need a support to deal with these things" ... Yes. HIV has moved from being a terminal illness to being a chronic one. That just means you have different challenges, not that the challenges are all gone.

And, just as that nurse thought the challenges were all gone, many people living with HIV themselves need to be reminded of these real issues that they face, and that finding peers is integral to being healthy.

Sean Cahill: Right.

Kellee Terrell: Sean, I wanted to ask you a specific question about some of the mental health issues, and some of the stigma that you've seen among gay and bisexual men living with HIV who are seniors.

Sean Cahill: Sure. So, well, there's certainly a lot of stigma within the gay male community against people living with HIV. I've seen that. And then there's age-related stigma; there's a lot of ageism within the gay male community. And there's this phenomenon that we talked about in Outing Age 12 years ago called premature aging. And it's this sense that you think you're over the hill at a young age. So, like, people seriously think they're old when they hit 30, or 35, 40. So forget it when they're 50 or 60. And they have a, just, really low self-esteem and a feeling of low self worth, and that kind of thing.

So there's a lot of issues. And actually, lesbians have a much healthier outlook on life, in relation to aging. And that's shown from research, and just qualitative research with lesbians versus gay men. So those are some issues.

But then related to that, the broader social context is that, I mentioned earlier how a lot of older Americans have outdated, sort of, inaccurate views about HIV and how it's transmitted. Similarly, older Americans tend to be more homophobic, less supportive of legal equality for gay people. But also, they tend to disapprove morally of homosexuality at higher rates.

So there's a number of questions that have been asked over the last 25, 30 years. And they tend to respond in a more antigay way to those questions. And that affects, certainly, particularly gay men living with HIV, who are in mainstream senior settings, like a meals program or a long-term care facility. But it actually affects everyone living with HIV. Because I really think that the antigay stigma is sort of inextricably entwined with HIV-related stigma, and that it even affects heterosexual women and men who are living with HIV.

Kellee Terrell: I want to talk about dating. A few years ago, I gave a talk at an Iris House summit called "Dating While Positive" and there were a lot of women in the room were 50 and older who were trying to find love. And it was really hard for them.

What are some of the challenges in dating for anyone over 50 and positive? Especially if you are looking for a partner that may not be positive. Sean, you were talking about older folks having, negative older folks kind of having these really preconceived notions around HIV. How does that impact how seniors living with HIV are feeling about themselves?

Frances Meléndez: I think it impacts and adds to the depression and the isolation. Often it's about disclosure: I can't disclose; I won't disclose; I'm terrified. I was at a conference for over-50 women. And I remember this advocate got up, a Cuban woman, and she said that for her, although she was an advocate, HIV for her meant loneliness forever. That shocked me. Because she said, "I will never, ever have a partner."

But she had already decided that no one would ever accept her. And that saddened me, to hear that. And that was the story for many women. Or, that if they were in relationships, they didn't disclose , which is another problem.

So disclosure in relationships is very, very, very difficult. I mean, I love the Dating While Positive because I think for some of the younger population, they were able to do that. But for the older population, they were very resistant to that concept.

James Masten: I think for gay men, the magnitude of loss has to be factored in, in that so many of the men that I have talked to have lost partners and friends. I have heard many men say, in one way or another, "Oh, well, that aspect of life is over for me." "Dating? Oh, that's something of that past."

And one guy I talked to -- I call him George in the book -- said how he wasn't going to get another cat after his cat died. He was very, very close with his cat -- it was his form of support. And he wouldn't get another cat because it was just too hard to deal with the loss. And he couldn't imagine going through that again.

Now, on some level, he was talking about this cat, as a companion. And on another level, it was a metaphor for how much loss this man had experienced in his life, that forming any new relationship; all he could see was, what it would be like to lose that.

Sean Cahill: The only thing I'll add to that is that POZ magazine has a Website, POZ.com, and they have a dating service on the Web site called POZ Personals. And I've heard great things. People finding other people who are positive, particularly gay men: it's a real relief. Because they're not just not having to worry about disclosing and possibly being rejected because of their status; but they also have this thing in common. And not just in terms of the physical impact of HIV, but also the sort of mental anguish of being HIV positive in a society that still stigmatizes it. And so, in that sense, they're finding somebody that can be supportive of them and their challenges. And I think that's a really great thing.

But for people who are, who do, fall in love with somebody who is not positive, and they want to have a relationship with them, the biomedical research that we're seeing -- and where we're seeing some promising results from pre-exposure prophylaxis: basically taking antiretrovirals to make your body less receptive to HIV infection. That holds great promise for people in serodiscordant couples.

There was a big study with heterosexual serodiscordant couples called Partners PrEP that showed really high rates of efficacy. There were two different drug formulations. One was tenofovir, and the other one was emtricitabine/tenofovir. And one had a 67 percent efficacy, and the other one had a 75 percent efficacy, which was a lower HIV-infection rate, compared to people taking a placebo.

And so you know, we need to have studies that look at serodiscordant gay male couples, as well, to see if this is something that could benefit them. But another study with gay men, called the iPrEP study, showed efficacy for that population.

So, long term, pre-exposure prophylaxis could provide additional protection for the negative partner in a serodiscordant couple, whether it's a gay man or a heterosexual man or woman.

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