A Journey of Growth: By Denise Drayton, Peer Educator and 50+ Scholar
Living with HIV since ’93 has been a journey of growth. When I was diagnosed, I never imagined living longer than 10 years. I remember thinking I wanted to see my grandson graduate from high school; he was just a year old then. Now he’s 29, married, and expecting his first child. Time flies, and I’m thankful for it.
Family support has been crucial from the start. I told my Mother first, and though she was concerned, her love never faltered. I should also mention that she already had one HIV+ child, my older brother, and she would keep separate dinnerware for him. My Mom, having grown up in a time of typhoid, only knew to separate eating utensils because that was how infectious diseases were handled in my Mom’s days. However, once we talked and I explained what HIV was and how it’s transmitted, she was open to learning more about it and even would share articles with me she read. I was so proud of her. My children, my daughter at 23 and my son at 12, were next. My daughter even enrolled in an HIV education program to better understand and help me. When we told my son, his response was reassuring: “Well, Mom, we’ll get through this like we’ve gotten through everything else.” With their love and support, I felt empowered to share my story to help educate and support others living with HIV.
Aging with HIV brings its own set of challenges, different from those of typical aging. While my medication keeps me healthy in terms of lab results, the way my body stores fat reminds me of the impact HIV and meds have on me. Vanity takes a backseat to acceptance—I dress in clothes I feel beautiful and confident in. Emotionally, I find peace in the abundance of supportive people in my life who guide me on this journey. My job, tailored to my experience as an older woman living with HIV, allows me to educate and advocate, working to erase the stigma and normalize HIV as a manageable chronic condition.
When I first faced treatment after my diagnosis, it was terrifying. I saw friends on monotherapy suffering from the harsh effects of AZT—hair loss, scorched skin—it was like watching them become burn victims. Trusting any medication seemed impossible, even when the new drug cocktail emerged. The Doctor’s words, “Take this medicine if you want to live,” echoed in my mind, but I hesitated, not wanting to go through that same experience as my friends. It took a leap of faith, prayers, and a T-cell count of 370 before I finally started treatment. The side effects were harsh in the beginning—explosive diarrhea and neuropathy—but with adjustments and medication changes, my Doctor and I found the right combination. From nine pills a day to just one, managing my HIV has become more achievable. Though I still deal with other health issues, reducing my HIV pill burden has been a relief.
Most of my friends work in the HIV-related fields, so it was easy to let them know, and when I disclosed my status to those who weren’t familiar with HIV, they were open and accepting. These friends have remained in my life since then. Being part of an HIV Ministry at my church has been rewarding. While I’m the only openly positive member, I’ve helped to educate others through workshops presented by people living with HIV. It feels good to see their acceptance and understanding of HIV as a manageable condition.
In my romantic life, honesty about my status has been vital. My partners have been fully informed of my status, and I’ve had both positive and negative partners. I met one of my negative partners during a safer sex class I was conducting. He was intrigued by my demonstrations of the toys part of the class. We took our time getting to know each other before becoming sexually involved. He asked questions, and I answered them openly and honestly. We even visited sex shops together to pick out just the right condoms and items to make our time together safe and fun. Throughout our five years together, we had a fulfilling sex life because of our love, knowledge, and understanding. Though we eventually parted ways romantically, we remained good friends, and he remained negative, thanks to our open communication and mutual respect.
Moving from New York to Maryland has been a big adjustment, especially regarding healthcare. In NY, I was used to having all my healthcare needs met under one roof, with my HIV specialist also being my primary care Doctor for over 20 years. The healthcare system in Maryland, I’m finding out, works differently. I’ve had to see multiple doctors for different issues, with the primary care doctor and HIV doctor in different locations. Navigating this system without a car has been a hurdle. With services spread across the county, getting to appointments requires more effort. Thankfully, I’ve connected with the Health Department in my county, which provides transportation to and from doctors’ visits.
Managing medical insurance has presented its challenges. Previously, my plan covered more of what I needed, but now I’ve had to navigate to ensure my plan covers everything necessary, and the cost has gone up. It’s been a learning experience adapting to the differences in healthcare between New York and Maryland.
I would advise anyone aging with HIV to be encouraged. Start by acknowledging that you are strong, resilient, worthy of love, and are living a whole life despite HIV. Don’t allow anyone to take away your joy. You are still you, just someone with a chronic, treatable illness; HIV doesn’t define you. You are fearfully and wonderfully made; live your life however you want.
You are not alone. Even if you may not realize it, there are people advocating for you. Today’s rights and services result from advocates who fought for them.
When you’re ready, consider joining the movement to fight AIDS and secure our rights for the future. It doesn’t take much: baby steps, volunteering your time, giving back to others, and feeling the joy of helping those in need of support.
Above all, be true to yourself. You are fantastic, just as you are. And remember to reach out. We’re here for you whenever you need a friend.
My Journey of Resilience: Living with HIV and Overcoming Trauma, Victor Velázquez, 50+ Scholar
Living with HIV for 30 years has been a journey of self-discovery and resilience. When I first received my diagnosis in 1994, I thought it was a death sentence. But here I am, still alive and healthy, which feels like a miracle. My diagnosis was a turning point in my life. It forced me to confront my mortality and the harsh realities of my past.
I had to face the trauma of childhood sexual abuse and the substance use that followed. But it also sparked a journey of self-healing and inner growth. Coming to terms with my mortality has been a crucial part of my healing process. I’ve had to confront that my time on this earth is limited, and that’s a scary thought. But it’s also motivated me to make the most of my time, pursue my passions, and build meaningful relationships.
Healing from my childhood trauma has been a central part of my journey of accepting the reality of living with HIV. I’ve had to confront the negative feelings and beliefs created by the sexual abuse episodes. I’ve had to learn to love and accept myself, flaws and all. As difficult as it was at the time, I had to learn how to let go and forgive the person who committed that terrible crime. Through therapy, I learned to look into the mirror. To look into my eyes of my reflection and talk to that little hurt boy … and say to him: “Papito, nene, it wasn’t your fault. You didn’t do anything wrong.” Though tears welled in my eyes during that heartfelt connection, there was also a sense of freedom. Through that cathartic conversation, I ultimately learned how to forgive myself.
So yes, today, I feel like my life is in balance. I have come to terms with the fact that HIV will forever reside within my body. I now understand that I have HIV … not that I am HIV, as I have heard so many people describe themselves. I refuse to be defined by my condition. I’ve found purpose and meaning in my advocacy work and relationships. I’ve learned to prioritize my physical and emotional health and seek help when needed. I’ve learned to appreciate the beauty and wonder of life, even when confronted by challenges that often make me want to pull the covers over my head and back from the world.
Living with HIV is not just about managing a disease; it’s about living a life that’s full and meaningful. It’s about finding purpose and passion and pursuing your dreams. It’s about building solid relationships and connections with others. That is why I appreciate my connection to the 50+ family.
If you’re living with HIV, know that you’re not alone. Know that there’s hope and healing available. And know that you have the power to create a life that’s full and meaningful despite your diagnosis. Don’t give up, don’t lose hope. Keep pushing forward and know that a better tomorrow is possible.