An open letter: Woman to woman
By Heidi M. Nass
© 2007 Heidi M. Nass

Sometimes I wonder if everyone who’s heard the words “You have HIV” or “You have AIDS” has a single, defining moment of their diagnosis. I wonder about this because 12 years ago I had my watershed moment, a rupture in time that divided my life into “before” and “after.”

Newly diagnosed with HIV infection, I remember standing in line for a blood draw and glancing down at the sheet that listed all the things they were checking. My eyes stopping on three letters: H-I-V. Even though I had been diagnosed already, that moment stays with me as the one in which it really hit me. I had HIV. That was my name on that list of lab tests. The HIV they were measuring was in me.

Now well on the other side of my diagnosis, I am able to look back at the distance I’ve covered and appreciate what I’ve learned by experience and from some very wise women living with HIV/AIDS who helped me find my way.

For what they’re worth, here are some lessons of my journey.

In the beginning, I couldn’t forgive myself for getting HIV. I felt compassion toward other HIV-positive women, regardless of what led to their infection, but I could not find it for myself.

That changed when a dear woman who’d gotten HIV from shooting drugs and had been living with AIDS for a long time said to me, “You know, if you’re looking for reasons to feel shame, you’ll always be able to find them. At some point, though, you might want to look for something else ... like forgiveness.”

HIV is a health condition, not a crime. People who get HIV aren’t doing anything differently than most people they know. The only thing that separates you from all the women who’ve had sexual intercourse or shared a needle but didn’t get HIV is that you got HIV. I eventually realized that thinking I wasn’t worth much or didn’t deserve much because I had HIV amounted to saying there was nothing more to me than a virus, which seemed a little silly. If you struggle to accept that there is more of you to love or hate than HIV/AIDS, take a page from our friends in recovery: Fake it ’til you make it.

Not too long ago, in the course of discussing treatment with a newly diagnosed woman in the clinic where I work, I disclosed that I was HIV-positive. A short time later another woman on staff joined our discussion and, when she disclosed that she was living with AIDS, the patient looked at us and covered her mouth. Knowing that it can be hard to be surrounded by people with HIV if you are not ready to accept that you are one of them, I asked if it was too much. “No,” she said in a teary voice, “It’s just that I thought I was the only one.”

In the United States, the estimated rate of new HIV infections is 40,000 a year. Globally, it is 11,000 a day. In tragic irony, while the HIV infection rate steadily climbs, the common experience of people living with HIV/ AIDS is to feel isolated and alone.

In 1985, less than one in 10 people with AIDS in the U.S. was a woman. Just 20 years later, it was moving closer to one in three. The impact is deepest among women of color: Black and Hispanic women make up one quarter of all American women but eight out of 10 American women with AIDS.

Shortly after I was diagnosed, I asked the question that I imagine almost every newly diagnosed woman asks: “Who’s ever going to want to be with me?” It was a stroke of good fortune that I posed the question to a self-respecting woman who’d been living with HIV for more than a decade already. “If someone loves you — I mean really loves you, “ she said, “and you tell him something like this, then he should love you more ... not less.”

At some point, death will take someone you love from you or take you from someone who loves you. AIDS, cancer, heart attacks — there is no shortage of reminders that our time on this planet is finite. Someone who is grateful for your presence in this world is going to hold you closer, not push you away, because you have HIV.

I worry about the people living silently with HIV/AIDS. After I was diagnosed, I didn’t come out about being HIV-positive right away because I was filled with the notion that it wasn’t supposed to happen to me. Strangely, when I did come out, it was for the same reason. It became important to me to say out loud, “Yes, me too” so that people understood HIV was in their midst.

I was able to be public because I had the love of family and friends, and I lived where protection and support existed. In many places, the flames of stigma are fanned by a tragic standoff: The need for more people to live openly with HIV/AIDS in a world that doesn’t feel safe for them to do so.

In a sea of silence and shame, voices carry. Those of us who can find the strength must speak up and out about HIV/AIDS so that it cannot be denied or ignored ... and so we can find each other. By refusing to live in silence, you may discover you were never alone at all.

Heidi M. Nass is a treatment advocate and educator based in Madison, Wis. Reprinted with permission from Positively Aware, September/October 2007.