My Journey To Treatment
Last updated: March 2020
Black gay, bisexual, and other men who have sex with men are more affected by HIV than other groups in the United States.1 In 2018, black gay and bisexual men accounted for 26 percent (9,756) of the 37,832 new diagnoses and 37 percent of new diagnoses among all gay and bisexual men in the United States.1
The numbers are staggering, and we are reminded of how much work still needs to be done in the black community to address the HIV epidemic. The reality suggests just how important it is for me to share my experience of actively adhering to treatment, to be visible, and share my story to fight against stigma and discrimination.
I was hesitant to start HIV treatment
Starting HIV treatment can be one of the most difficult decisions we ever have to make. Part of that decision-making process comes by acknowledging to yourself that you are living with HIV. It is clear to me that internalized and systemic stigma can have an affect on how long it takes for us to seek care and treatment.
At the time, few treatment options were available
When I started taking ART in 1998, it was seven years after I was first diagnosed with HIV. When I tested positive for HIV, there was only one treatment available which was AZT. AZT, azidothymidine, was originally developed in the 1960s by a U.S. researcher as a way to fight cancer.
For me, I had heard many conflicting stories about the effects of AZT on the bodies of people living with HIV. It was a difficult decision to make, but I decided not to take AZT. This was a personal decision that I made largely based on the fact there were so few treatment options. By the time I began treatment, my CD4 count was 2 and my viral load was extremely high, but there were several treatment options available.
Reasons why I delayed HIV treatment
Although I had delayed taking medication, I was in a doctor’s care. My thinking was that I wanted to go without medications for several reasons. I wanted to allow my body to go as far as it could without treatment. I wanted to wait for the development and approval of more treatment options.
I led a very busy life
I had been in great health throughout the course of my life. I didn’t smoke and drink. I was an athlete and I was in great physical shape. I had a young son and a very active professional career. I also enjoyed African dance and drumming. I was busy. I didn’t understand how I could fit HIV treatment into my already extremely active day.
I was scared and felt isolated
The biggest reason I delayed HIV treatment was because I was absolutely scared out of my mind. I was isolated and didn’t have anyone who was living with HIV in my social network so I couldn’t ask anyone directly about treatment.
Starting and adhering to HIV treatment
Fortunately, today there are many one pill, once-a-day treatment options. With all these biomedical advances, I don’t suggest waiting for anyone. These are much different times. The medications available today are far less toxic than a treatment that includes AZT. Treatment works.
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