Older Americans with HIV: Voices from the Community

By Tanya Henderson, PhD | September 3, 2015
Program Director, Community Impact Solutions Program, ETR

In my companion blog post, “HIV and Older Adults: 6 Steps to Building Better Awareness,” I discuss some of the issues we need to address if we want to succeed in HIV prevention efforts with older Americans. However, no understanding of these matters can be complete without the voices of people living the reality of being over 50 and coping with HIV.

 

I am extremely grateful to three people in that circumstance—Vanessa, Ed and Kathy—who took the time to share their experiences with me. Here are some of the things they had to say.

Vanessa Johnson

When Vanessa Johnson was asked about being over 50 and having been diagnosed with HIV for almost half of her life, she said, “I really never believed I’d live long enough to grow old.”

Misdiagnosed in 1988, her HIV diagnosis came in 1990. At that time, doctors told her she had about 7 years to live. Vanessa is a survivor of childhood trauma, and the notion of a long life had always seemed elusive to her. She just continued to live as she had. “When you have the perspective that you may not be here tomorrow, you don’t do things to preserve your physical future….I didn’t take very good care of myself because I was told I was going to die.”

She felt fine physically at the time. “I was really healthy when I was diagnosed. My T cells were over 500. I didn’t go to the doctor because I felt sick, but rather because I was having recurrent yeast infections and abnormal pap smears.”

Early on in the epidemic, when so much of the focus was on HIV in men, these signs were not understood. Later, they were recognized as markers in women for weakening of the immune system and HIV progression.

Vanessa’s diagnosis came mere months after she received her law degree from Temple University. Her only child, a son, was 5 years old. Once she was diagnosed, her son had to go through the testing process five or six times before doctors felt confident he was free of HIV.

Since Johnson felt well physically, she rejected the notion of taking AZT, the medication commonly prescribed at the time, because of its debilitating side effects. Instead, she began to cope by self-medicating. This included the use of hard core drugs. She explains that it was her eventual recovery from drug use that actually gave her the will to live.

Vanessa now recognizes that the effects of addiction, coupled with the HIV infection, have taken a toll on her body. “HIV is a crippling disease,” she explains. “It eats away at your muscle and affects you in ways you don’t even think about. The regular effects of aging are accelerated by HIV. It affects the bones too.”

In 1995, Vanessa’s T cell count began to drop. Medications for HIV had made some advances since she was first diagnosed, so she took a chance on a clinical trial. She credits her entry into that trial with saving her life. “Not that I wasn’t already getting good medical care, but I got exemplary care as a part of the trial.”

Looking back after 20 years, Vanessa realizes that once she got clean, she compensated by thrusting herself into work. She describes herself as “driven,” working almost 24/7 at times. She realizes now that this was a form of addiction as well.

Today, she continues to work with great dedication. But she also manages to spend time with her son, now 30, and her nieces. She is enjoying the opportunity to watch the children grow up.

Over the years, a range of people have come into her life. Vanessa appreciates the ways the relationships she has developed have helped her deal with HIV and growing older. These include others with HIV, people in the recovery community, and families raising children orphaned by HIV. “Talking to other people living with HIV probably gave me more useful advice than any of the doctors and medical professionals.”

Ed Gadsen

When Ed Gadsen was given his HIV diagnosis in 1987, he said his only reaction was, “Hurry up and give me my bus tokens so I can get out of here, sell them and buy some drugs.” Addicted to injection drugs, he didn’t get clean for another 6 years. He is still haunted when he thinks of the people he may have infected during that time.

He has now been clean for almost 22 years.

Today, at age 62, Ed says that, although he is surprised he’s still here, he figures he’ll die of something other than HIV. He smoked for 40 years and recognizes the effect that smoking has had on his health. Currently his kidneys are failing. He has to go to dialysis 3 days a week and is working toward getting a transplant.

Ed says that more than the worry of his physical health, he is burdened by the psychological effects of HIV/AIDS. He worries about his children and grandchildren. He understands that as his health declines, not only is he less able to help them, but he may need their help.

Since getting clean, he has become a staunch advocate for helping others infected with and affected by HIV/AIDS. For the first 10 years after his diagnosis, he focused greatly on HIV, trying to inform people, working as an HIV test counselor. He really didn’t think about what it meant to be living with the infection.

As a single man, he often discloses his status way before the first date. Although he has had girlfriends through the years, he says, “Rejection is never easy.”

He recounts one particular instance that is still painful to remember. Because he was becoming well-known in the community where he lived due to his prevention work, he stopped dating a woman with young children. He feared his involvement with the family might affect the children’s relationships with their peers.

Kathy Creek-Vann

When the HIV diagnosis came, Kathy Creek-Vann was shocked. She was not infected due to some clandestine hook-up—the sort of connection she had believed would be risky. Rather, it was a man she believed loved her—someone who would take steps to protect her if necessary.

She decided to create a way to help other women by putting pen to paper and writing the play The Dance. The play was performed to sell-out audiences at THEARC Theater in the Southeast Washington DC neighborhood of Anacostia.

The Dance tells the story of two women. One, a professional at the prime of her life, has HIV but is in denial about her diagnosis. She meets a man and they begin to date, but her fear of disclosing her status leads her to tell him they can no longer see each other.

The other woman receives her diagnosis just before moving into a retirement community. Some nosey but well-meaning neighbors happen upon a document indicating her diagnosis. They spread the news.

A potential suitor whose sexual prowess (in his own mind) brings on the admiration of the other men in the community gets blamed for transmitting HIV to the woman. This makes for some comical yet tense moments in the production.

A screening of Kathy’s play was presented at the 2012 International AIDS Conference in Washington DC. It was part of a workshop on the use of performance art as an HIV prevention method. Kathy continues to be a staunch advocate for HIV/AIDS awareness, particularly among older adults.

No Two Alike

Every person living with HIV has a unique story to tell. The conversations with Vanessa, Ed and Kathy underscore this.

These stories also remind us that when we bring HIV into our conversations with our clients and patients—and with our family and friends—we have the potential to make a world of difference. This is just as important for someone over 50 as it is for someone under 30.

We might communicate essential information about using protection. We might help someone build a better recognition of the risks and realities of HIV. And, for people living with HIV, we have a chance to share understanding and learn from them about the support they would most value.

Tanya Henderson, PhD, is Project Director of ETR’s Community Impact Solutions Project. She can be reached at tanya.henderson@etr.org.