Rae Lewis-Thornton On Living Well With HIV: The Earlier You Start Treatment, The Better

I’ve been living with HIV for 40 years, however, I didn’t learn of my status until almost three and half years later. For sure I survived the most difficult period of the AIDS pandemic. We have gone from no medication, when I was diagnosed in the Spring of 1987, to forty-three medications in five different classes, based on how they work against HIV. Yet, HIV is still very much a problem, not only in the United States but abroad. Specifically in the U.S., people living with HIV are still plagued with stigma, which affects people getting tested and diagnosed so they can begin treatment, but also, the stigma brings so much shame some end treatment, for fear that someone may learn of their status.

It’s crazy to think that after 42 years in an HIV pandemic, we are still stuck on some of the same issues that we had in 1981 after the first cases were recorded by the Centers for Disease Control, and even in 1994, 13 years after I appeared on the cover of Essence magazine. Discrimination is still rampant. There is this unwillingness to accept medical advancements around HIV.

People ask me all the time, is that really true? People say, “Magic Johnson must have a magic pill or something.” There’s this big contradiction in how people marvel over the fact that Magic has lived and I lived in the face of the prediction that was announced on the cover of Essence, “Young, Educated and Dying From AIDS.” This was the gospel as we understand the destruction of AIDS. For sure I should have died from AIDS-related complications somewhere around 1997.

Today though, my story is very different from the stories of others diagnosed with HIV. I mean, there are over 40 HIV medications. Some can suppress the virus within six months of treatment.

Yet, for as much as I differ, there are some similarities. I still deal with the stigma, but equally important, I have to manage my health right down to the last pill I take at the end of the day as does every single person living with HIV.

In part, managing my HIV well has been my secret to my longevity. Once years ago, a reporter asked my doctor what was my secret, and she said, “Rae Lewis-Thornton does what she suppose to do.” It is like this: If my doctor said take 23 pills a day I did. If the medication made me sick, I spoke up on my behalf and then the doctor would work on a substitute for what was making me sick. If there were no substitutes, then we did what we could until we could get to the next best thing.

For example, one time I had to take 31 pills a day for a year. Another time I had to drink 72 ounces of water a day or my HIV medication would give me kidney stones. We were a team, my doctor, Mardge Cohen, and I.

Also, I understood my baseline with HIV and I was never afraid to ask questions or speak up for myself. Those two things are the most important in the management of your disease.