I'm a 22-year-old woman living with HIV. In 1991, I lost my mother to AIDS. I did not know that she'd died of AIDS until several months after her death. Because she was a drug abuser, I wasn't really surprised when I was finally told what had killed her. My mother's death was the hardest thing I thought I'd ever have to deal with.
Only ten months later, at a routine doctor's visit, when I was asked if I wanted to be tested for HIV, I remember being shocked and slightly offended. The doctor himself said I was not in any of the risk categories. To my surprise, two weeks later I received a positive diagnosis. I was 19 years old, HIV-positive and all alone.
I felt as many people do who test HIV-positive: isolated, with a heavy feeling of shame. I didn't exactly know why, I don't remember anyone ever telling me, but I felt as if I had done something wrong. I had a big secret, and I couldn't tell anyone.
I spent many months feeling very much alone and I didn't share my secret with anyone. I was only 19, and I hadn't even begun living, and I was waiting to die. Although I found the courage ten months after my diagnosis to see another doctor who explained to me that I didn't have AIDS as I'd originally been told, that I was carrying HIV, I still could not tell anyone.
In 1994, almost two years later, I finally met other people who are living with HIV. I couldn't believe that other people could live with this dreadful disease and still be happy and live positive lives. Finding the support of other people with AIDS (PWAs) helped me accept that I was HIV-positive and could live a long, positive life.
This has not been easy. I'm sometimes so very scared of this virus and what it can bring. I try on a daily basis to live my life to the fullest. Today, I take care of my 13-year-old sister, and try to teach her what she needs to make it in this world, especially how to respect herself and her body. I want her to grow up with enough self-esteem and self-confidence to make the right choices in life, and that includes protecting herself from AIDS.
This does not mean that I or anyone else living with HIV made the wrong choices. I only used the misinformation that was given to me, and that was that I could not get HIV, that I was not in any risk category. Someone was wrong.
Today I dedicate my life to educating others, especially young women, about HIV and AIDS. Many young women I speak to are as misinformed as I was about risk, and even the ones who do know more about AIDS still don't believe it can affect them--until it hits home.
I recently spoke to a group of young women peer educators in Springfield, Massachusetts. I asked them toward the end of our session, do you know now how to keep yourself from becoming infected with HIV? I told them they needed to have enough self-confidence to tell their partners they had to wear condoms.
But working with young women and girls must mean more than telling them to develop self-esteem. Yes, we must instill these values in young women--but how can they achieve a sense of their own worth when all around them are families and communities that don't treat them with respect? AIDS education for young women means little if we don't also address these issues in the broader community, to create a context in which they can become stronger and smarter about how to protect themselves.
I also speak to people who are already infected, and try to teach them how to live positively with this disease. There is still hope, and we have to keep that hope alive.
The greatest support that I have has been received from other people with HIV, both at home and internationally. People living with HIV and those significantly affected know firsthand what a tremendous load this disease is. This is why my involvement in organizations like the AIDS and Adolescents Network of New York and the AIDS Policy Center and the National Women's AIDS Project in Washington is so important to me.
Most important, I represent the International Community of Women Living with AIDS (ICW), which is an international organization based in London. Three years ago at the 8th International Conference on AIDS in Amsterdam, many women with HIV realized they were still being discriminated against and were very much alone and isolated. Because of the lack of support and information available to HIV-positive women, they got together to create an international organization to educate, support and, most of all, empower other women living with HIV. Today ICW has members in 70 different countries throughout the world.
Unfortunately, people with AIDS around the world are still fighting discrimination, as if living with a terminal illness is not enough. I hope to see service providers, policy makers and, most importantly, people living with HIV working together on prevention and care services for all affected by this disease.
I hope I've helped to put a face on this disease, if one is still needed. I am only one of millions. I ask that participants at this conference take whatever information is gained here and share it with your communities. If we're going to work to stop the spread of HIV and AIDS, especially among young people, we must stop working in isolated efforts and start working together, developing solutions that make sense for communities as a whole. If nothing else, let AIDS bring us together to look beyond all our differences.
-- Jecenia de Jesus, International Community of Women Living With AIDS
This essay is adapted from a presentation Ms. de Jesus gave to the 3rd USAID HIV/AIDS Prevention Conference in Washington, D.C., on August 8, 1995.
Jecenia de Jesus is a full-time program assistant with the AIDS and Adolescents Network of New York. She is also a key North American contact for the International Community of Women Living with AIDS (ICW). For more information about ICW, write to its international headquarters at Livingstone House, 11 Carteret St., London, SW1H 90L, United Kingdom.
