Follow the remarkable journey of one individual living with HIV for 40 years, from the early days of the pandemic to the present.
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 is supposed to do.” It is like this: If my doctor said to 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.
I read everything I could. I spoke up for myself. I took my darn medication, and I followed the instructions. I didn’t miss dosages. I didn’t double up on dosages and I didn’t stop my medication, no matter how sick it made me. I always talked it over with my doctor first.
Today, treatment is so much easier than in those early days I experienced. Take for example the HIV drug Biktarvy. This once-a-day pill can be taken any time of the day (with or without food) and on the go, if you have a busy schedule, making them easy to fit into your life no matter your routine.
Honestly, my early life with HIV never has to be your experience. HIV medications are nothing short of remarkable. Pill loads are smaller, even once-a-day pills like Biktarvy. Side effects are less. The earlier one starts treatment, the better. That’s why you must get tested for HIV.
Getting one’s virus suppressed is the single most important thing about living with HIV. Then keeping it suppressed is the second most important thing, and these two can only happen if you take your medication as prescribed. With that combination, you can live a healthy life. Managing HIV becomes more like a chronic illness rather than a deadly disease.
That choice is right in front of you. Get tested, get in treatment, and stay in treatment. Let me tell you what is remarkable about HIV treatment today. If your viral load is undetectable, meaning if the HIV virus particles in your blood are 200 millimeters or less, for at least six months, you cannot transmit HIV to your partner sexually. Let’s stop making HIV this scary disease when it can simply be a chronic illness. Yes, undetectable equals untransmittable.
With that said, the only thing left to say is:
1. Get tested.
2. Get into treatment.
3. Comply with the treatment plan.
4. Learn about HIV.
5. Ask questions when you don’t know.
6. Co-manage your disease with your doctor. If your doctor doesn’t hear you, then get another doctor.
These are the keys to my success, living with HIV/AIDS.
Rae Lewis-Thornton is an Emmy Award-winning AIDS Activist. She is the first African-American woman to tell her story of living with AIDS on a national magazine cover story, Essence December 1994. She has been featured on countless other TV shows and magazines. Nightline, Oprah Winfrey Show, CNN, Essence, Huffington Post Live, HLN News, O’ Magazine, Woman’s Day, Ebony, Jet, HIV Plus, POZ, Heart and Soul, Glamour and the list goes on and on. For over 20 years, she has traveled worldwide challenging stereotypes and myths around HIV/AIDS. Rae is a blogger and uses social media heavily to educate about HIV. She is the author of two books and is currently completing her memoir, Unprotected. Rae is an ordained minister, and jewelry and knit accessory designer of her namesake line RLT Collection. She has been living with HIV for 34 years and AIDS for 26 years. Follower her on Instagram and Twitter @raelt.
