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Believe It... Women Get AIDS!

August 2001

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:

  • A spiritual crisis. ("Why me? Am I being punished? How will I find the strength to face this?") AIDS is not a punishment from God. For some, spirituality (with or without religion) is the key to survival.

  • An emotional crisis. Emotions ranging from numbness ("This can't be happening."), to terror ("Am I about to die?"), anger ("How could someone do this to me?" "How could I have allowed myself to get this?"), grief, panic, shame and worry ("Now what am I going to do?") can be overwhelming. Feeling hopeless can be dangerous. ("I'll just kill myself.") There can also be positive emotions. ("Now I can see what's really important, and what's not." "I never realized I was this strong." "I appreciate every day now.")

  • A crisis of trust. "What about my partner? Did I infect him (or her)? Did he (or she) infect me?" "Did the person that gave this to me know they had it?" "Does this mean my partner cheated on me?" "Does this mean my husband's gay?"

  • A dating/relationship crisis. "Will anyone ever love me?" "Could I ever allow anyone to love me?" "Will my partner leave me?" "Should I leave my partner?" "I'm afraid she'll leave me when I really need her" or "I don't feel worthy of his love anymore, so I'll pick fights or create excuses for him to get out of this relationship." HIV can tear people apart, but know that it can also bring them together.

  • A financial crisis. "How will I pay for medical care, or medications?" "How can I get, or keep, insurance?" "How can I keep working to earn money to pay my bills if I get (or know that I am) sick?"

  • A job crisis. "What will happen if my co-workers or boss find out?" "How does my work affect my ability to protect my health?" (Most jobs in hospitals, clinics, day-care centers and schools where germs abound, are held by women.) "Will my career be over if my colleagues/clients/patients/customers find out?"

  • An education crisis. "Why stay (or enroll) in school if I won't live to graduate or use what I learn?" "What if my classmates find out?"

  • A family crisis. "How will my parents and siblings react?" "How would my relatives take this?" "My mother's already sick. This could kill her." "If my cousin finds out, she'll tell everybody."

  • A family health crisis. "My husband is dying. What do I do?" "My baby has AIDS. If my baby has it, so do I. But I have to get my child well. Then I can think about myself."

  • A crisis of shame. "I shouldn't have this. I knew better." "When people ask me how I got this it makes me feel like they're more interested in judging me than helping me."

  • A parenting crisis. "What about my kids? Do they need to be tested?" "Who'll take care of them if something happens to me?" "Should I tell them? I don't want them to worry, but if they hear it from someone else that would be worse."

  • A pregnancy crisis. "I'm pregnant. What about my baby?" "I want to have a baby, but my husband/doctor/mother doesn't approve." "Why wasn't I offered a test before I got pregnant?" "My husband wants me to have a baby, but I'm scared."

  • A crisis that revives the past. "I got out of that relationship years ago, but he left me with HIV I can't get out of." "It's been hard enough forgetting the rape. Now every time I think about HIV it'll make me remember it." "I got off drugs and alcohol, only to have this?"

  • A safety crisis. "If I tell my partner, he'll kill me." "If the prison authorities find out, they'll put me in seclusion." "If my family finds out they'll put me out of the house."

  • A self-image crisis. "I've lost so much weight, I'm afraid people can tell." "I'm afraid the medications will change my appearance (skin, body fat distribution) and people will be able to tell by looking at me that I have HIV."

  • A social crisis. "I try not to think about it, but it's all I can think about. My friends/family can't understand why I'm acting different." "I feel angry at people who don't have this, who have this but aren't sick, or whose babies didn't get HIV when mine did. I know it's not their fault, but it's just not fair."

  • A drug and alcohol crisis. "I'll just use drugs until I die so I don't have to feel this bad." "Why'd I bother to get clean and sober, only to be punished with this?" "How will people in my treatment program or 12-step group (AA/NA) react?"

  • A sexual crisis. "My partner will leave me or beat me if I ask him to wear a condom." "I have a lot of shame about getting this from sex." "I hate/don't know how to use/can't afford condoms." "My partner will suspect something if I ask him to use a condom." "What do I do if I tell my partner I have HIV and he/she still refuses to do safer sex?" "Will I ever be able to enjoy sex again when it reminds me of HIV?"

  • A crisis of worrying about the future. "What will people say?" "Will I lose my partner, friends, job, housing, career, pride in myself?" "How will I survive if/when I get too sick to take care of myself?" "I don't want to be a burden on my family." "No one can love my children like I do. I can't bear to think of leaving them." "My friends look forward to the future; I have a lot of fears about mine." "I'm afraid of dying alone."

Starting Over

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.
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