Two long-term survivors discuss the risks of social isolation

People need human connection in order to survive. As people grow older, a chipping away of connections to social life often leads to isolation from family and community.

According to research compiled by the AARP Foundation, the negative health effects of social isolation among older adults rival those of smoking and obesity. Older adults living with HIV are particularly vulnerable to isolation in part because they are more likely to live alone than the general aging population. 

I sat down with Gina Brown, MSW, and David Fawcett, PhD, LCSW—both social work professionals and long-term HIV survivors, and both active with the HIV/AIDS and Mental Health Training Resource Center—to talk about the ways older adults living with HIV find themselves socially isolated, and what can be done about it.

How does social isolation happen?

David Fawcett: I think a lot of older people living with HIV, especially in the gay community, may feel less energetic, less attractive, and invisible in the community. That can result in isolation.

Also, despite surviving so long with HIV, I think many of us have side effects from the medication that impair our ability to go out and socialize. Even though people are basically healthy, there may be residual effects from the years of drug trials and that kind of thing.

Gina Brown: As a woman who is 50 and living with HIV, I’m also starting to feel some of that isolation and that loneliness. People say, “Go out and mingle.” But where do you go, and who do you mingle with?

As we get older, the younger people around us have their own lives. Your siblings pass away. That causes older people to be even further isolated, when family is not even around. So, they rely on the HIV community.

DF: That’s exactly the experience I’ve seen. For a lot of the older gay men I work with, I’m surprised at how damaged the family relationships were from way back. Those relationships never really healed, so they’re living without that natural family support. It falls to them to create a chosen family.

Then there’s a complicating factor with substance abuse, where a lot of people have burned bridges with their families before they got well. I think that contributes to this lack of biological family support systems.

GB: Transportation can be a factor in isolation as well. It’s been more than 10 years since Hurricane Katrina, but New Orleans is not back to the way it was before the storm. A lot of bus services didn’t come back in some areas, and it’s hard for many older people to get around.

DF: When I work in the Florida Panhandle, there are people up there who are hours from any kind of medical provider, and many lack transportation. They may just give up on trying to get services. I think particularly in the South, it’s just horrendous.

People living with HIV often experience high levels of trauma and PTSD (post-traumatic stress disorder), both before and after they test positive. How does trauma contribute to isolation?

DF: The experience of living with HIV from my generation, and Gina’s generation, is very different than the experience of younger people getting diagnosed today. There are tremendous amounts of loss and grief, and a feeling that the experience that we had is not acknowledged.

I see a lot of people self-medicating from the effects of trauma—and not just with recreational drugs. I think there has been a tendency for physicians to over-prescribe to people living with HIV. Many of my clients have standing prescriptions for tranquilizers, sleeping pills, pain pills. Traditional medical providers may not understand the link between trauma and some of the symptoms they’re seeing. That falls to members of the mental health community, who may also be really ill prepared.

GB: I am one of those older adults who has survived not only childhood molestation, but also intimate partner violence. I’m in therapy. I have a great support system. But think of all of the women who never tell anyone that this happened to them, and never work through it.

I often talk about needing to take a step back and look at the HIV community members we see as loud, or angry, or combative, as possibly having some kind of unaddressed trauma.

DF: I agree: Trauma is a desperately needed focus that we must address, both in terms of how it’s driving new infections, and how it’s affecting the quality of life of people living with HIV.

How can community organizations support mental health and prevent isolation?

DF: As HIV has become mainstreamed as another chronic medical condition, a lot of the things we had in the early days, like buddy programs, have fallen by the wayside. More of these programs would be tremendously valuable.

In my community, we have a program now where people will walk someone else’s dog, or there may be money to take their dog to get vaccinated if the owner can’t afford it. Dogs can be essential for mental health.

GB: In New Orleans, there aren’t many senior citizen centers around anymore, so older adults can’t even go and hang out with people their age. I would love to see some safe spaces just for them.

In a perfect world, we would really take care of our elders. We would really respect them; all that they’ve given to the world, we would give back to them.

DF: We have a very large gay and lesbian community center here. They do a coffee meeting on Tuesday mornings geared toward people 70 and older. They get 200 people; sometimes it’s the only outing these people have all week, and it’s fabulous. It doesn’t have to be expensive or complicated to present opportunities for people to connect with each other.

Is there a role for advocacy —or networks of people living with HIV—in combating isolation?

GB: For some of the advocacy networks like Positive Women’s Network-USA, that have older people as members or on the board, the older people have to drive the conversation and make sure that our issues are on the table. We have to make sure that we’re educating young people on the things that are happening with older people.

Those of us who are growing older with HIV, or who were diagnosed at an older age, need a place and a voice. There are places that are already set up, so we don’t have to reinvent the wheel.

DF: I think there’s a fatigue that comes with living with HIV for so long. I’m a great believer in purpose. I think a lot of older people living with HIV may have lost their purpose, or can’t identify with it. It’s wonderful to give people opportunities to come together, to keep having these conversations, to acknowledge their experience and their value, which I think they themselves don’t recognize.

What advice do you have for anyone working with older adults living with HIV?

GB: When I worked as a social worker, I would always remind the other case managers that for older people, especially older black people, respect is big. If it’s Ms. Jones, call her “Ms. Jones,” not by her first name.

DF: Another thing would be to reconnect with our compassion and empathy for what people have gone through—not just in surviving, but in many cases thriving, and now starting to deal with the other complications of age.

GB: Compassion and respect are huge. All humans want that. But as we get older, it becomes even more precious.

Gina Brown, MSW, is the planning council trainer and coordinator at the New Orleans Regional AIDS Planning Council, and an appointee to the U.S. Presidential Advisory Council on HIV/AIDS (PACHA), and has worked for many years with women living with HIV as an activist and a Ryan White service provider.

David Fawcett, PhD, LCSW, is a sex therapist and clinical hypnotherapist practicing in Fort Lauderdale. He is the author of Lust, Men, and Meth: A Gay Man’s Guide to Sex
and Recovery.