I would like to share my story about my HIV. It started way back in 1985 when HIV/AIDS transmission was still misunderstood by many. I had been married for almost 10 years and my ex-husband was my first sex partner. Well, I just happened to be back in the dating scene in 1984 when HIV was emerging into all populations. I was using birth control and had never had any STI’s before and had the mentality that nothing like that would happen to me. I met a guy I worked with shortly after the divorce. He was nice, clean and healthy looking, I had no reason to believe there was anything wrong with him. We started a relationship and I was on birth control pills and did not use condoms. I already had a child in 1980. Now this was shortly before the HIV test came out, so I know he didn’t know he was HIV+. He did disclose to me that he had a history of using IV drugs. That is how he most likely became infected.
Our relationship lasted about a year or so. I had seen and read new discoveries about HIV, such as no symptoms for many years and that if you had sex with IV drug users you may be a risk and this scared me very much. When the virus was identified and the HIV antibody test came out, I was afraid to get it.
I saw hopelessness in this. No meds and only people dying. I felt fine and didn’t want to know. I stopped seeing my boyfriend and went on with my life.
About five years later, I started to feel like something was terribly wrong. I had always been healthy. I was fatigued very easily, had fevers and shortness of breath. I went to my family GP, he gave me antibiotics but I was not getting better. I asked him to give me an HIV test and he said I didn’t need that. I don’t think he knew too much about this and since I wasn’t a gay man or an IV drug user, he thought it couldn’t be that.
The breathing issue became too bad and I had to be hospitalized. I was told in in the ER that I had some kind of pneumonia. I knew that people who had AIDS were susceptible to a certain type of pneumonia and asked to be tested. Even then, the nurse questioned me. I was so sick. My fevers were extremely high and I had to us an oxygen mask. I managed to survive what I now know was pneumocystis pneumonia, a very serious opportunistic infection. Back then there was no luxury of a ten minute HIV result test. I was tested in the hospital and had to wait almost a month to get my result. I went back to that same GP to get my results after I came home. He said to me, “your results were no good,” and gave me the phone number of the county hospital and said “you go here now,” and that was my inadequate counseling.
So once you know, you can’t not know. Some people back then chose to ignore it. I didn’t do that. I was scared, and afraid to tell my son because he was only 10 years old and I felt it would cause much trauma in his life. I didn’t know anyone else with HIV and felt very alone and even a bit ashamed. How could I have let this happen to me! My first primary care visit labs revealed that I had only 23 t cells and an AIDS diagnosis. A support group helped me very much. In 1991, I attended my first. All men, and me. But it didn’t matter because they embraced me and made me feel welcome. And it helped me so much to see and talk to others who could really understand what being HIV+ felt like.
As time went on, I just kept getting sick over and over again, in and out of the hospital. My son was about 12 years old and asked me what was wrong with me. I didn’t want to tell him, but I knew it could not keep this from him anymore. I told him. He cried and asked me questions I couldn’t answer. He didn’t want anyone to know because of the stigma. I know he was going through his own personal suffering as was my very supportive Mom. The trauma of this information had caused him to start doing bad in school and he gained weight. I felt so bad and a burden to my family.
I had been given AZT on my first primary care visit, but it didn’t help. I was pretty much waiting to die. In 1996 I got lymphoma cancer and was at my bottom. Mom was going to put me in a nursing home/hospice. I told her, “please, I will be okay.” I had this feeling that it was not my time yet. She let me come home and right around that time HAART was available. I started taking Norvir and Epivir. For the first time in many years, I saw my t cells go up and most important, there seemed to be hope now. Maybe I wasn’t going to die.
It took me about a year to recover from the cancer and chemo therapy. In 1998, I wanted to do something other than be in the house on the couch. I was not going to give up my disability because I was not cured. I had remembered Alison Gertz, the NY socialite who came out with her story of getting HIV from a one night stand with a bartender. She did this at a time when no woman had ever done that. I admired her courage and bravery. She wanted to tell her story to help others, especially high school kids. I wanted to do that to, but was just too ill. Now was the time to give back and be a part of the solution and not the problem anymore. The ASO I was using had a client speaker bureau and I signed up. Went into schools and started telling my story. It felt good to know I was now doing something to help others. I told of how unprotected sex with the second man I was ever with was how I became infected. I wanted them to understand that this can happen to anyone.
I’ve been educating and speaking ever since and now I work through Planned Parenthood as a peer educator. I’m so grateful for the time I’ve been give and want to do whatever I can to help stop people from getting infected. Street outreach, speaking and testing. It’s all good! I have HIV it doesn’t have me!
Nancy - 56