There is a world we all live in where we hope that everything is OK and that the adversity we will experience doesn’t stay too long. In spite of that adversity, we as humans hope for the best while silently preparing for the worst—but within that preparation, are we truly prepared?
I am going to attempt to tell you my journey as a person living with HIV. It has been more joyous than heartbreaking. I feared writing on this topic because this is one facet of my life that I keep very private, but telling my truth might help someone see through theirs.
I was born in 1980, a year before doctors discovered GRID (Gay-Related Immune Deficiency), which we all know today as HIV/AIDS. I grew up in Prince George’s County, Maryland, in the city of Largo, and much talk of the virus wasn’t heard in passive conversation until music artists like TLC, Janet Jackson, and Salt-N-Pepa brought it to the forefront of their work.
I wasn’t as educated on the virus, but I knew I didn’t want it for me, even though I wasn’t completely clear what was my sexual identity. Fast forward to 1996: At the age of 16, I decided to accept my identity as being queer and made a covenant with myself that I would wait until I was 18 before I began interacting with men.
In March of 1998, during my senior year of high school, I started my first conversation online with a man via Yahoo! Chat using the computers at Prince George’s Community College (my mom didn’t see the importance of the internet at home yet, and I was a concurrently enrolled student, which is how I got access to the internet). I felt alive. I finally tasted my truth, and it was exquisite. Queer culture isn’t perfect, and there were sweet and sour moments, but still sweet nonetheless.
On Aug. 6, 2006, I was diagnosed with HIV at a doctor’s appointment at Kaiser Permanente in my hometown.
My doctor said, “What was your last HIV result?”
I said, “Negative.”
He followed up with, “Well, this time you are positive. I’m sorry, but all the best. The nurse will be right with you. If you need a second, I understand.”
I didn’t cry. I didn’t scream. I just felt the room stop. I remember the stillness of everything. The silence was deafening, to the point that you could hear a mouse piss on cotton. The nurse, who I had gotten to know very well, walked in, and she consoled me.
I can’t really explain in context what I was feeling. Part of me was sad because I understood the depth of my mortality, and part of me was happy because I never had to worry about the virus again. I was concerned about what my mother would think because she has always been my biggest supporter. I worried about finding love again—and if I would.
The world was different in 2006. While HIV stigma still exists today, no one was talking about living with HIV then unless they wanted to be a spokesperson for the virus. You didn’t know other people who were living with HIV either, unless you were working in that field of study or assistance. Also, disclosing was a risk to your safety. Even with all those thoughts, I knew that the clock was ticking. I didn’t know what I wanted to do, but I needed to live.
At that moment, I went home (I was still living with my mother) and used the internet for once, for what it was worth. I got on the hookup websites and reached out to other Black men who were living with the virus and asked questions. One man even welcomed me to his home the same night to talk my feelings out. In our exchange, I found out he had been living with the virus since the ’80s and somehow he survived—many of us did not. I don’t know where he is today, but he was essential to my new normal.
He directed me to Us Helping Us, an organization that provides holistic HIV services to underserved and disenfranchised groups, for mental health services. I participated in that for two years. Sadly, during that first year, I completely avoided going on antiretroviral therapy. As that year progressed, I went from 140 to 125 pounds, I started to lose my hearing, and I had peripheral neuropathy and night sweats. I also developed shingles at one point because my immune system was so compromised.
At that point, I made myself go to the Whitman-Walker Clinic for health care, since Kaiser didn’t set me up for any aftercare services for my HIV. I walked into the doctor’s office for my results, and I had a T-cell count of 238 (anything below 200 means your condition has transitioned to AIDS) and a viral load of 125,000. I was not doing well. I decided at that point to get on medication—and in a matter of months, I was undetectable, and all those wild symptoms stopped. I knew I had a journey in front of me.
Fifteen Years Later
HIV has been the gift and curse in my life that I never saw coming. It made me face my mortality and ignited a fire in me to live my life to the fullest. I chose to love the ones closest to me more and to actually exemplify that love. Not only was I in a better space with my family, but I have also had many, many lovers and relationships. HIV never stopped me from finding romantic love, regardless of the person’s HIV status.
One thing I decided earlier in my diagnosis was to always disclose my status so people could make their informed choice to be with me, even if it was just sexual. The language of disclosure involving HIV is layered, and that is left to the individual. Disclosure, for me, wasn’t just about being able to sleep well at night, but to take some of my power back. I have also disclosed to my family members one by one through the years and, graciously, they have received it well.
As you go on your journey with this condition, I have found it is important to have great, communicative health care.
Wherever you get health care, make sure you are honest with your doctor. You are in a partnership with them, and you should not be afraid to ask questions. If you happen to get health care from an organization like AHF (which I do currently), it is important to utilize the litany of services that they offer. The foundation specializes in HIV health care, while also providing testing services for sexually transmitted infections and HIV, and it has an in-house pharmacy. Don’t feel ashamed, this is about you.
I will admit that pill fatigue is a thing. It is when you get exhausted with your regimen and start skipping doses. It’s not great, but you can develop resistance to some of the treatments if you skip doses—and you don’t want that.
HIV competency in our country has grown medically, politically, and socially. It is no reason that you can’t live a full life. Truthfully, I feel that people living with this condition do live longer because we have to monitor our bodies so closely. I will say, be good to yourself, be kind to yourself, and know that you are going to be with your body for a long time. HIV is just a condition, not a death sentence, and not the end of the essence of the beautiful life you will live.