The Real Deal When You're Living With AIDS

Rae Lewis-Thornton
Rae Lewis-Thornton

I was 23 years old when I was diagnosed with HIV in 1986. It was a cruel and ugly time to be told that you were HIV-positive. Three months earlier, I'd given blood for the Red Cross, and now, in a five-minute meeting, they were delivering the bad news. The Red Cross employee didn't know what to tell me. There were no medicines to treat HIV. They were kicking kids out of school with HIV. That same year, a prominent magazine told women that they couldn't get HIV through heterosexual contact if they had a "healthy vagina." It was a time of chaos and misunderstanding. I didn't know where this disease would take me or how my life would change.


It was a scary disease. It was a scary time.

My only hope was these words, uttered by the bearer of bad news:  "You only have HIV. You may never get AIDS." I walked out of the Red Cross building that day and went back to work, repeating those words. "I only have HIV."

In those days, HIV seemed manageable. Somewhat. AIDS, on the other hand, was a death sentence. So my prayer was, "Lord, don't ever let me get AIDS." But five years later, my world changed when I made the inevitable transition to AIDS. I went from 3 pills a day to 23. In six months, I dropped from a size 12 a size 6. I was on the fast track to my mortality; back then, once AIDS kicked in, you had about three years from disease to death.

Then, whenever I spoke at high schools, I'd ask the freshmen class to stand. I'd announce dramatically, "By the time you graduate, I will be dead." After all, I could look at myself in the mirror and see death staring back at me. Within a few years, I had wasted away to a size 0. My T cell count was 8. My viral load was 397,000, and I had three bouts of Pneumocystis carinii pneumonia (PCP), the number one AIDS-related infection that killed people with AIDS. There was no expectation for me to live.

Except that I did live.

Things changed seemingly out of nowhere. Scientists developed a new class of HIV medication — protease inhibitors — that actually reduced the amount of the virus in the body, allowing the immune system to repair itself. This miracle drug changed the landscape of AIDS and saved my life. I often say that God let me live long enough to benefit from advancements in HIV treatment.


But treatment is only half the battle; the other half is compliance: Doing what I am supposed to do. Taking my medicine no matter how it makes me feel or how it changes my body shape. And I've watched my shape mutate over the years: I developed lipodystrophy, which resulted in fat pads being deposited under my chin, back and breasts, and fat disappearing from my cheeks, arms, legs and buttocks. My cheeks sank in, and I developed a hump on my upper back. AIDS ravaged my looks, disfiguring me. I looked like Spongebob.

But still, I was alive.

I remember when AZT, the first HIV medication to be approved by the FDA, was in drug trials. People in the study shared their medicine with those who were not in the study. And then it was approved, and it was our god. I took 800 milligrams a day and didn't give the side effects a second thought — even on the days when I couldn't hold my head up because I was too weak, or the days I couldn't stop the diarrhea from running down my pants leg. It was all we had, and we did what we had to do.


Now it's not uncommon for HIV-infected people to stop and start their medication at their leisure, doing more damage than they could even imagine, and for sure setting up a resistance to future treatment. In fact, the Centers for Disease Control and Prevention estimates that approximately 30 percent of new infections are drug resistant.

And apathy is running rampant in the United States. These days, AIDS is the silent killer. We're not paying attention, and as a result, AIDS-related deaths are easier to ignore than they were in the days when people were dying at record numbers. The fact that America has moved on is disheartening, especially when there are still more than 50,000 new cases a year in the U.S. Today the color of AIDS is black and brown: African Americans make up more than 50 percent of HIV cases — and only 13 percent of the population.


I wonder if America cares about us as much as it did when the face of AIDS was white and male. I wonder if, once again, people have to die in record numbers to get it: AIDS is here to stay. Advancement in treatment has no doubt been a good thing. But it has created a whole new set of issues. Discrimination remains an issue: A tattoo parlor once refused to serve me because of my condition. (I took it to court and won.) HIV drugs are inordinately expensive — even more so in this horrible economy. I've had to sell my clothes and jewelry to make ends meet. Science is making radical advances in the treatment of AIDS, but living with AIDS remains a hard slog.

This week, all eyes have been on Vienna, where the International AIDS Conference has just concluded. Promising new research was presented. Perhaps the rest of the world —and this country — will wake up to the realities of this epidemic. And so I hope, and pray.


Emmy Award-winning AIDS activist Rae Lewis-Thornton rose to national acclaim as the first African-American woman to tell her story of living with AIDS on the cover of Essence magazine. Read more about her on her blog, Diva Living With AIDS. Follow her on Twitter.