Believe It... Women Get AIDS!
I have been living with HIV in my body for 18 years. For the first seven of those years, I had no idea. I wasn't sick. I didn't feel at risk. The message in 1990 was that only gay men, promiscuous women, or people who had shared needles got HIV. (The truth is anyone can get HIV.) Then a close friend confided that her sister had AIDS. My friend was going to get tested and was scared. "Don't worry," I said. "You'll be fine. I'll go with you." I did, and she was fine. But my test came back HIV positive. I had HIV.
HIV (the Human Immunodeficency Virus) causes AIDS (Acquired Immuno-Deficiency Syndrome), a disease that weakens the immune system to the point that the body can no longer protect itself from infections. HIV/AIDS is a life-threatening disease that has treatments, but no cure.
When the San Francisco Bay Area media marked the 20th anniversary of the first AIDS reports in June, they barely mentioned women. Their silence sent a dangerous message. Any woman watching the news could easily have concluded (wrongly) that the epidemic posed no threat to her.
When I was diagnosed I felt like the only woman with HIV. Now I know better. I am one of 35 million adults with HIV, and 47% of us are women. Women's share of AIDS cases in the United States has gone up from 7% in 1985 to 23% in 1999. The U.S. Centers for Disease Control (CDC) estimates that 30% of new HIV infections in the U.S. last year were in women, and that 75% are through heterosexual sex.
Those of you who have been told "You have HIV" know how overwhelming it is to hear those words. Being diagnosed with HIV feels like a medical crisis. The wait between getting the diagnosis, and getting answers to your questions, can feel like forever. ("Do I have AIDS already? If not, how long until I progress to AIDS?" "Will I need medicines?" "How will I pay for them?" "What if they make me sick?" "Will I die of AIDS?" "How long will I live?") However, a diagnosis with HIV is much more than a medical crisis. For many women, a diagnosis with HIV or AIDS can also be:
When someone tells you that you have HIV, at some point you have to walk out of that person's office and back into your daily life. Only now everything is different. Your whole life has changed, but only you know it.
You can feel like there's a neon sign flashing "AIDS" on your forehead. Do you try to hide it? When people ask how you are, will you smile and say, "fine"? When you go home, will you walk in the door and go about cooking dinner or washing clothes like nothing happened, to protect your children/family members/partner/roommate from the truth? Will you fall apart, tell all, and take the chance that maybe you'll be ostracized, but maybe you'll get help? Will you go to work, church or the potluck that was already scheduled and act like this isn't happening?
How much energy will it take to talk to the people you talk to every day, go to work and/or care for children, do the laundry, cook the meals, pay the bills, and keep a smile on your face while you try to figure out a safe way to get information, medical care and support? How will you figure out who you can tell and who you shouldn't? When you call that clinic or agency and get an answering machine, will you leave a message? Where will they call you back? Home? Work? A friend's?
Some people face these multiple crises head on at the time they're diagnosed. But not everybody can. Starting over after an HIV diagnosis is really, really hard, whether you have support, money or power or not.
An Opportunity to Grow
While HIV magnifies the problems women face, it can also magnify people's hearts, their inner strength, their solidarity, and their compassion. I've seen HIV-positive women get informed, advocate for themselves and one another, clarify their priorities and reach out to give and get support. However much people despise having HIV, many would say there have been blessings in the form of people, growth, and support they did not expect.
During my 10 years at WORLD I have seen women find support, begin dating again, get married, have babies, go back to school, regain custody of their kids, get clean and sober, earn college degrees, land their dream job, get out of abusive relationships, see their kids graduate and grandchildren be born, get treatment for posttraumatic stress disorder and depression, speak out about incest or rape for the first time, march in the streets, educate their legislators, speak at schools, organize AIDS ministries in their churches, face death in a hospital emergency room or intensive care unit and get better, go back to work from disability, make friends with people they would never have met before, and develop deeper, loving relationships with themselves.
You are not alone!
This article was provided by Women Organized to Respond to Life-Threatening Diseases. It is a part of the publication WORLD Newsletter. Visit WORLD's website to find out more about their activities and publications.