An Open Letter: Woman to Woman

Sometimes I wonder if everyone who's heard the words "You have HIV" or "You have AIDS" has a single, defi ning 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 infect ion, I remember st anding in line for a blood draw and glancing down at the sheet that list ed all the things they were checking. My eyes stopping on three letters: H-I-V. Even though I had been diagnosed already, that moment st ays with me as the one in which it really hit me. I had HIV. Th at was my name on that list of lab test s. Th e HIV they were measuring was in me.

I couldn't imagine then ever moving beyond the feeling that a bomb had been dropped on my life. Th ere I st ood, at the edge of a gaping crater, unable to imagine how such a big, overwhelming void could ever be fi lled again.

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 landmark 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 them 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." Until that moment, I had forgotten that forgiveness is something we choose and that it only happens when someone chooses it.

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 with a man 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. I'm not sure shame ever goes completely away -- there's always someone (maybe even yourself) willing to judge you. If you struggle to accept that there is more of you to love or hate than HIV/AIDS, take a page from the book of 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 the world over 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. You are not alone.

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." In my lingering shame and shock, that sounded radical to me. Now, I know it to be the truth.

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. Life is fragile, and HIV doesn't let us forget it. Someone who is grateful for your presence in this world is going to hold you closer, not push you away, because you have HIV.

People often assume that women with HIV/AIDS cannot have children. As it turns out, the ability to prevent transmission of HIV from a pregnant woman to her baby -- both while the fetus is developing and during the birth process -- is arguably the greatest achievement in the history of the HIV epidemic. Before we had antiretroviral therapy, and even before the question of HIV transmission from mother to child had been studied, it was common for pregnant women with HIV/AIDS to be told to have an abortion to avoid transmitting HIV to their babies. In truth, without any use of antiretrovirals to reduce the amount of virus during pregnancy or at delivery, about one-third of babies will be born HIV-positive. When women use antiretroviral therapy and work with skilled medical providers, that number turns to zero.

The joy I feel that women with HIV/AIDS can have healthy children is tempered only by what some women endure at the hands of their providers, in the name of good medicine, to get there. A friend of mine summed it up well by describing her own experience: "It feels like they're at war with the virus and I'm in the way!"

Some providers, especially those who work with only a few pregnant women now and then, sometimes treat a pregnant woman like a situation they need to manage instead of a person they need to support and listen to and respect. They forget that they are not the only ones whose priority is an HIV-negative baby.

If you are thinking of getting pregnant, seek information from a variety of trusted sources so you know your options. If you aren't prepared to make informed decisions about your body and your baby, others won't hesitate to make them for you.

I worry about the people living silently with HIV/AIDS. Even when they say they're fine with hiding their pills from the people in their lives and letting judgmental remarks about HIV/AIDS go by, I worry that silence will kill them long before AIDS does.

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. It also helped me integrate this new part of me into the rest of who I'd always been. I found great liberation in the surrender of my secret.

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 on all continents the flames of stigma are fanned by a tragic stand-off: 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.

You will meet people for whom HIV/AIDS has become a place to hide from life and all the hard stuff that comes with it -- intimacy, responsibility, self-respect. Some people get so comfortable in the idea of themselves as damaged or sick that they could be professional victims if the occupation existed.

Not long after my diagnosis, I attended an HIV workshop in which the audience was asked to do a short exercise with the instruction "write a letter to your condition." Instead of writing to HIV, I found myself writing to my self-esteem. I was frightened of HIV and what it would do to me, but I knew in that honest moment that if I was to focus on how I wanted live with this instead of how I would die of it, a virus was not the most troublesome truth I had to confront.

It's true that this disease can be hard and painful and scary, but lots of things in life are hard and painful and scary. HIV/AIDS doesn't come with a "get out of life free" pass. In fact, it can give you good practice at dealing with adversity ... if you let it.

Heidi M. Nass is a lawyer turned treatment advocate and educator. She is based in Madison, Wisconsin, at the University of Wisconsin HIV Care Program. She may be reached at hmn@medicine.wisc.edu.