My Journey Aging with HIV

I will be 64 next month and living with HIV for 36 years. I had a lot of illness at the beginning of my diagnosis in 1990 when I was only 39 years old. I thought I'd die soon and never see my son grow into an adult or see 40 years old myself.

In 1998 when I realized I may be here longer than I had planned for due to the new anti-viral that had come out, I was already retired at such a young age and wanted to do something else other than what I'd been experiencing for the past decade. I put my face out there and spoke in many schools so others may not contract HIV. Now all these years later I've been honored with awards and recognitions that I never thought I'd get.

They say HIV accelerates aging and I believe this to be true. At only 50 years old I already had arthritis in both my hands and the start of osteoporosis. I don't know if it's the long term HIV or the decades of taking the meds that may have caused this. I also have memory loss and am not sure if that is my age or something else. I do work part-time and I feel exhausted sometimes, but I want to keep working because it keeps me active. This has become even more challenging during Covid as I work in an HIV testing van.

More awareness is needed when it comes to HIV and aging and I've been working with other 50+ cohorts to advocate for more services. Geriatric care and HIV were two things that really never went together, but now that 70% of people living with HIV in the U.S. are over 50 years old, we need help and we matter! Social isolation, food insecurity, mental illness and long term survivor PTSD are just some to name and there are more issues we are facing as we age with HIV. As we are the first generation of people to experience this, it must not be dismissed.

I'm extremely grateful to still be here and try and take care of myself by eating healthier and doing a lot of walking. My greatest reward was to see my son turn 41 years old this past year and for that I am forever grateful.

God Speed






Bethany M. Brown M.Ed.'s picture

Oh, my goodness! I am sitting in my chair doing a dance and cheering you on. Kudos!

I frequently find myself in the ever-so-awkward "training up" position with my service providers. It is awkward because I know they have skin in the game and they mean well, but I am constantly floored with just how much I "case manage" my own care.

As the understanding of HIV has progressed and I have gotten to go along for the ride, I have seen it time and time again. In my backyard, I had to advocate for things such as mental health services, dental care, and gynecological needs. I do feel a certain sense of pride that I was involved in the creation of a rubric made more than 15 years at our local coalition that agency-based case managers use to ask questions to provide service. But, then, I get tired. This rubric has not advanced concerning issues of aging and in understanding side effects from longterm HIV chronic infection. Things having to do, in my case, with neurological disorders, menopausal syndrom, and connecting with others such as myself in my community.

On a good day, I feel anchored in advocacy and bouyant with progress. On a bad day, I feel like a lab rat who is in a constant en vivo scientific experiment. I applaud your positive attitude! Do you have any suggestions for when someone, like me, gets fed up with having to possess a positive attitude while feeling bone weary tired from the need for constant advocacy?

Hugs, Bethany



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