September 18 marks National HIV/AIDS and Aging Awareness Day (#NHAAD).
Currently, just over half of people living with HIV in the United States are 50 and older. While this is due to lifesaving and effective treatment, which has helped those diagnosed in the 80s and 90s to live longer healthier lives, we cannot forget that 1 in 6 people newly diagnosed with HIV are 50 and older. While many, through their lived experiences, work, and activism, have paved the way for a new generation of people living with HIV, often, this same demographic can be overlooked when it comes to funding, advocacy, and outreach.
Given the obstacles they may face, they cannot afford to be ignored or silenced. They deserve better.
So, to honor our elders, we asked five people over 50 living with HIV to share with us how they age with dignity, how they thrive, and advice they have for those who are younger and/or newly diagnosed. In their thoughtful, frank, and honest responses, they recounted when the epidemic was a death sentence, stressed the power of being able to stand in one’s truth, and shared why building community is essential to thriving and living a long life with HIV.
Year of Diagnosis: 1986
The truth is, aging with dignity while living with HIV—much like many aging as a Black person in America—meant that I had to endure a lot of undignified sh*t along the way. Widespread public ignorance and fear only compounded and complicated the racism, bigotry, and discrimination I witnessed and experienced as a young Black man trying to keep myself alive and afloat in this world. The accumulated and internalized pain and discomfort I lived with privately for many years would show itself horrifically at times, fueled by self-medicating and the sheer terror of meeting death. To survive this virus, to survive myself, I needed to learn how to accept and love myself before I could actually heal and protect myself. With support from my family and loved ones, I was able to chart that long road of recovery and transform myself into the healthiest version of myself possible.
I wish I had a shining piece of advice for young people living with HIV or those struggling with internal challenges impacting their mental, spiritual, and psychological growth. The world around us has historically been cruel and chaotic, demeaning and deadly. And all current indicators point to these trends not ending anytime soon. However, we can find strength and value in sharing our experiences with strangers and with our communities. Sharing our struggles, successes, fears, and joys all help us learn and value each other while also acknowledging and appreciating ourselves in the process. Sometimes the first step in accepting and loving ourselves is allowing yourself to grow, share, and breathe freely with others.
Katie Adsila Willingham
Year of Diagnosis: June 2000
Aging with dignity with HIV is also rooted in thriving, which can mean different things to different people. I remember after my diagnosis in 2000, thriving meant not dying and that, in time, evolved from taking my medications religiously to becoming educated and aware of my condition. As time went on, my definition of thriving required some giving back, learning to not only advocate for myself but look beyond myself to see the needs of others, and being part of a community. Thriving is being intentionally happy and content and involved with the world around you. It truly is a personal journey you must define for yourself.
If you are newly diagnosed, know that your condition is not a death sentence, and you may have a long life ahead of you. So learn to advocate for yourself with your doctor and be involved in your healthcare, discover what brings you happiness and enjoy it even more, and find a supportive community that understands your journey. I’ve lived with HIV for nearly half my life, and I’ve got a long way left to go, so don’t be discouraged or depressed, or anxious. You have a lot of thriving to do.
Year of Diagnosis: 1993
State: New York
Aging with HIV is like anyone getting older. You have aches and pains, and you don’t move as fast. But over the past 30 years, I have evolved into a confident, strong, independent woman. I know my worth and my potential to exceed and overcome all of the obstacles that were placed in my way. After my diagnosis, I had an HIV-negative child, returned to college, obtained my Bachelor’s degree, and became a teacher of Special Education. I am currently halfway through my Master’s degree in Special Education. So for young and/or newly diagnosed people, just stay motivated to reach your personal goals. Don’t let anyone or anything deter you from greatness. HIV is a diagnosis, not a death sentence. You can do anything you want to do and be anyone you want to be.
Year of Diagnosis: 1986
State: New Jersey
When I think about aging with dignity, I go back to the beginning. Testing HIV positive in 1986 meant death, while ignorance, fear, stigma, and homophobia were the norm. There was little hope, no medicines, and little, if any, support to rely on. As friends, roommates, and lovers succumbed to this virus living inside me, I waited and thought it was only a matter of time before I died too. Many lived in fear and remained silent about disclosing one’s status. some lost jobs, housing and family. Over the next few years, drugs came to market, but the feeling was they were only prolonging the inevitable. Thanks to protease inhibitors in 1995, there was a glimmer of hope as many were responding and coming back from near death, myself included—the Lazarus effect. So now, for the past 25 years, aging with dignity means being here, standing in my truth. Most importantly, being open about my status as a gay man living with AIDS has afforded me freedom. I no longer have to need to hide in the shadows.
So for the newly diagnosed, try to develop that same type of freedom, truth, and empowerment, especially regarding your health. Develop an open and honest relationship with your healthcare provider. Take your medication as prescribed and go out and live. Follow your dreams, and don’t let anyone try to place guilt or shame. It’s a virus, not a moral deficiency.
Year of Diagnosis: 1995
As someone who has lived more years with HIV than without, I’m still in awe of being alive today. Now at 51 years, I have a different view of growing old. I embrace every grey hair and wrinkle because they are proof of my life’s journey. I strived and nurtured relationships with family and friends, I’ve built a loving home with my husband of 24 years and our dog Beau, and my career has afforded me the openness to be who I am without censorship. By no means that living with HIV is easy—taking daily medications, worrying about my health, and regular health provider appointments–but I have learned not to allow HIV to be the driving force but accept that HIV is a constant — but small — component in my life.
Recently, I had dinner with friends who were all Asian & Pacific Islanders and long-term survivors of HIV. Looking around this table, I was so grateful to have been an integral part of these amazing and inspiring community leaders, advocates, mentors, activists, and proud representatives of the API LGBTQ communities, who were in the height of the HIV/AIDS epidemic in the 80s and 90s—and still to this day. I am who I am today because of them, and aging with dignity is to proudly state that my name is Henry Ocampo, and I am a 51-year-old gay Filipino man living with HIV.
For young people living with HIV, don’t close yourself off from others. But reach out to find the support that you need. I know because I am a good example of what happens when you have a community that teaches you how to thrive with HIV.