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By: Jecenia de Jesus, International Community of Women Living with AIDS
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
diagnis. 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 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) help 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 it in this world, especially hot to respect herself and her body. I
want her to go 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
choice. 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 also 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.
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 and 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.
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 everyone who reads this, 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. (AIDS Captions 11/95)
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, SWIH 90 L, United Kingdom.
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Last updated : Saturday, October 19, 1996
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