Excuse me, Miss... your test result came back positive.
I will never forget the day I heard those words. I still get a numbing feeling just remembering. So much in my life is different, that it seems almost like a lifetime ago. When I heard those words, I was in college, as clueless as one can be about HIV. Although I had lost my mother to this horrible disease, in my mind she "fit" the description. I didn't. I know better now, boy do I ever!
When I was first diagnosed, I just assumed it was inevitable that I would die... soon. Therefore I didn't focus on my health, it was actually almost a year before I saw a doctor again. Because I wasn't dealing with my health, I put all my focus on dying and making sure no one knew I was going to die. It was very difficult for me. I was going on 20 years old and was already facing death!!
At that time my biggest concern was that everyone would reject me. I was afraid to tell my family and friends. I could not understand why. I don't remember anyone having said it to me, but I just knew I wasn't supposed to tell anyone that I had HIV. At that time Magic Johnson had just revealed his status, but I was no Magic!
When I decided that it was time for me to go see a doctor, I had the luck to stumble across the Adolescent AIDS Program at Montefiore Hospital. For the first time, the medical staff there explained to me what HIV was and how it could affect my body. I was fairly healthy, I was asymptomatic with a high T-cell count (viral load was not available yet).
Knowing that was not enough for me. If I was going to live a little longer, I was not going to live the way I had been. I was sick and tired of being ashamed of having HIV. Why should I be?!
I began speaking out in the community. I wanted everyone to know that there was yet another population being ignored! There were several amazing advocates who were fighting for women and AIDS issues, many of whom were HIV+ themselves, but there were not many young positive women willing to speak out.
No one could have prepared me for what lay ahead. Before I knew it, I was traveling all over the world to conferences and speaking to other people, mostly youth groups, about HIV. This was a crazy period in my life. Although I had lined up with many other HIV poster children, I had not even begun to deal with my own issues around being positive. I decided it was time to take care of me. Ironically, that year protease inhibitors were approved. I remember talking with a friend about them. We had contacted many of the treatment groups and had gathered a bunch of information. We thought we had all the answers, even going so far as figuring out our own combinations. I never started any, she did.
In 1996, I started working at an employment agency for people living with HIV, and while there, I realized that one of the greatest obstacles that PWA's had to overcome to get their lives back was how to deal with these medications. As the intake coordinator, I wasn't always able to answer their questions. I had heard about the Women's Treatment Project at the PWA Health Group from a friend, but had never attended a group.
Lorna (the Coordinator at that time) and I started talking on the phone a lot. I finally decided to come to group. I had never met such a positive group of women. Their outlook on how they were going to deal with this disease amazed me. For the first time I felt safe in a group. I had stopped attending groups. They just didn't work for me. I could not sit in a room with other people talking about how this disease had won or was going to win.
This was the first PWA group that I had come across where women were just trying to figure out how to educate themselves about their bodies, so that they could support each other in making some life altering treatment decisions. I started coming to the PWA Health Group on a regular basis. I could not believe how much information was available. I thought back to when I was first diagnosed. I would spend a great deal of time in my college library looking up, or at least trying to find, information on AIDS. As I think back now, I can not believe how little information was available. There was always information on prevention, but nothing for someone who was already positive.
In the winter of 1997 I found out I was pregnant! More than ever I depended on Lorna and the Health Group for treatment information and support. When Lorna decided to leave the Health Group, I decided to apply for the position of coordinator of the Women's Treatment Project. I was very happy when I was hired.
This year has been filled with wonderful experiences as well as challenges. I have had the opportunity to work with some of the best treatment advocates.
I am very excited about this first issue of Women's TX News. For a very long time many women in the community, myself included, have been trying to work on a newsletter, just for women, that focuses on treatment issues.
I hope this first issue and those to follow offer treatment resources, information and support to all positive women.
This is your newsletter, so please feel free to make comments, suggestions or even submit articles and offer story ideas.
I hope you enjoy this first issue!!
Copyright ©1999 by People With AIDS Working for Health, Inc. Non-commercial reproduction is strongly encouraged.