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HIV and Aging
Living With HIV ≠ Aging With HIV

Released: October 27, 2023

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Key Takeaways
  • To be a person living with HIV and aging is to be a survivor.
  • Losing friends to HIV at a young age has made aging a lonely process.

Until recently, the phrase “aging with HIV” was viewed as an oxymoron. Fortunately, aging is now a possibility for many people living with HIV. Some may observe that it’s the same thing, but in my experience, living with HIV and aging with HIV are 2 separate things. Living with HIV has been a drag, but aging with HIV has been breathtaking at times. 

Reflecting and Remembering

What I oftentimes wonder as I live with HIV is, “How would the people who have already passed have responded to different situations if they were still here?” I think about my friends a lot because I need them and they’re not here. They were supposed to be here. We have an entire generation of people missing because of HIV. I survived, and I needed them here beside me. As I age, I think a lot about what I would have been, what I would have been able to do, had this person been alive. I often feel like I’m all on my own because my friends are gone.

I want healthcare professionals (HCPs) to understand that I lost a lot of my friends at a young age and aging without them has been difficult. Aging in and of itself is often fraught with loneliness; I feel that I’ve been lonely from a young age given the loss of so many of my friends to HIV.

My View of HIV as a Younger Adult

I left upstate New York at age 18 because I just had to be part of what was going on in New York City. There was excitement in New York City in the 1970s, including Studio 54, that I got to enjoy at the height of my younger years.

There were ominous warnings everywhere about HIV, but I paid no attention to them. Why would I? I was young and invincible. So, when HIV came along, I thought to myself, nothing is going to stand in the way of having a good time. Period. 

A Changing Viewpoint

Living with HIV, I determined that I was going to have to be successful all on my own, and that was going to take some thought and action. I always knew deep down that I was not going to die from HIV. However, many of my friends did. Although I did get some help from a lot of other people, I knew that my successes living with HIV started and ended with me. I decided I was going to live my dreams and go after everything I wanted, regardless of HIV.

I hope that my HCPs understand that it took a lot of self-motivation and self-preservation to overcome the barriers I faced as a person living with HIV. I am here and I am aging because I was determined to make that the case.

In addition to living with HIV, for a time I was also living with hepatitis C (HCV). A huge transition for me was when I was cured of that virus. I say transition because since having been cured of HCV, I feel like I’ve had a fighting chance against HIV. 

Health Insurance Changes and Continuity of Care

In 1987, I could no longer afford my monthly insurance payment. My payment at that time was $410 USD per month, which is almost $1,100 USD today when adjusted for inflation. My inability to continue to afford my insurance coincided with a move, and I was able to sign up for Medicaid. Eventually I transitioned to Medicare insurance when I was eligible.

During each of these insurance-related transitions, as well as when I moved and switched HCPs, my HIV care never changed. I was always provided with good-quality healthcare and consistently had access to what I needed. I recognize that may not be the case for all people living with HIV and understand the importance of care continuity. Having been cared for in various health systems, my experience has been that sometimes the best HCPs I had were in the systems with the least financial resources. 

Living With HIV as an Older Adult

I pursued my dreams, and now I am 65 years old living with HIV. In hindsight, my accomplishments, successes, and character are all things I’ve been proud to achieve. As the years progressed, I found my voice—one that represented my true feelings and hunches.

At age 50, after being cured of HCV, I found a new hope that I had not felt for a long time. In 1980, I was told that I had 2 years left to live and that I should get my affairs in order. I had been in hospice twice as a younger person, and I made it out. It takes a lot of patience and respect because if not for my newfound clarity, I would find survival to be a struggle. I have been through the 5 stages of grief and have processed a lot of grief during my lifetime because of all of the trauma I have experienced. I want HCPs to understand that to be a person living with HIV and aging is to be a survivor.

As I have aged, I have found the skip in my step, so to speak. There are many gifts that come along with aging. Aging relieves the pressures of having HIV. I now know what is important to me. I better manage my stress, and I’m overall happier. I’m enjoying my life so much, and I wish this for all people.

Your Thoughts?

How does your approach to the care of people living with HIV change as they transition from younger adult‒ to older adult‒oriented care? Join the conversation by posting a comment.