June 22, 2010
by Cristina Gonzalez
To commemorate National HIV Testing Day on Sunday, June 27, POZ asked you, our readers, to recount your experiences testing HIV positive. Who better than people who have tested positive for the virus to tell people who don’t know their HIV status why they should get tested?
We strongly encourage everyone, regardless of your HIV status, to promote HIV testing to family, friends and colleagues. No matter the result, knowing your HIV status can help improve your life. To learn more about HIV testing, click here.
Your stories varied greatly, representing the diversity of the HIV/AIDS epidemic in the United States. However, they shared many of the same feelings—from sadness and denial to acceptance and hope. Below are excerpts from some of your responses.
“My story starts with the ‘flu’ and a high temperature. After a doctors’ visit, antibiotics, aspirin and juice, the ‘flu’ got worse. I went back to the doctor, who asked if I would sign a release form for a new test. I had only been in three long-term relationships and had very few outside partners, but I was so sick, I thought, ‘Of course, anything, just get me well!’ The day before Thanksgiving, the doctor called me and told me I had AIDS. I was told I had six months to live. But I was over the ‘flu’ and feeling well. How could I have AIDS? I was retested at the county hospital, which denied treatment until my [CD4] levels were under 500. I had to change doctors and lie or omit the information of my HIV status or risk refusal of care. I was tested every six months until my [CD4] levels dropped and I received treatment. I am 53 years old and was tested in 1985.”
“In 1984, I had double knee surgery. The night before my surgery, I had a nightmare that I would get HIV through a blood transfusion. I woke from the surgery to find I was being drawn for blood cultures [because] I had a reaction to my emergency transfusion. Two months later my feet began to tingle, like pins and needles. I went to a free clinic and tested HIV positive. I was unemployed and had no health insurance. The health insurance group I finally enrolled in never once turned out a positive test result for me. I wanted to believe I did not have HIV. I also knew that once diagnosed, I could not get any other type of health coverage because of pre-existing conditions. So I just went on with my life until I developed pneumocystis pneumonia in 1998 and nearly died. Now, I am living.”
“I was a large person and began losing weight, which made me happy. I felt fine. But my boyfriend noticed and became concerned. In September 1994, I got tested [for HIV] at a local public health office. It came back positive. I sat my boyfriend on the sofa to share the news (a dead giveaway). My boyfriend died 13 years later. He developed cancer in the spleen, and his vision deteriorated. Now, I am getting older and am not as strong as before. My vision is getting worse, and I stumble occasionally. The ophthalmologist says my eyes have no evidence of HIV. My primary care physician and the infectious diseases doctors both say I probably won’t die from complications due to AIDS.”
“My test was not really a test. I went to donate blood, to show my daughter how we could help people in need. A volunteer told me I would hear from them in two weeks if there is anything wrong with my blood. A month later, I received a letter from the Red Cross. As I waited in their offices, I kept saying to myself, ‘It must be cancer.’ I’d heard about HIV, but I thought it was a problem for gay men only. I was new in the dating scene, and I did not use condoms all the time. When a volunteer came in the room, she sat down and told me I was HIV positive. I wanted to die, my head was spinning, and I was in disbelief. I told her she was wrong and I had to be retested. It has been 20 years since that time. My little girl is grown and has children of her own, my [CD4] count is 1,800, and I am doing great.”
“It was 1989. I was an 18-year-old heterosexual female, non-IV drug user in New Hampshire. I went to the visiting nurse association for the test and two weeks later went back for the results. Nothing in my mind or life gave me any reason to expect anything but a negative [result]. I went in with my anonymous identification number and sat down at this enormous table in a private room with a nurse. She told me that I had HIV. It was like a brick wall. Disbelief, fear, anger, denial all washed through me. As I drove out of the parking lot, I [fantasized about] driving into a nearby tree. Within a week, a doctor confirmed my HIV status and informed me that I had six months to live. I am 40 years old now. [Now] I see the trees, but I just keep driving past them.”
“I was feeling as though something was wrong, so I went to my family doctor for an HIV test. Several days later he called and asked me to come in, which scared the hell out of me. I had night sweats and didn’t sleep. When I showed up at the office, he was even more nervous than I was. I was the first patient he’d ever had who tested positive. He reassured me that it was ‘no longer a death sentence’ and made an appointment to hand me off to a specialist. The nurse practitioner I met became my angel. I have a negative partner, and I took him for his first HIV test with her. He’s still negative and felt comfortable enough to ask many questions about what we need to do to be safe. He wants us both to live a long time.”
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