"Who Gave You AIDS?"
One of my roles as HIV activist and advocate is educator, and I speak to groups about HIV prevention. Earlier, I would address this point during the main part of my presentation. However, I now wait for it to come up during the question-and-answer segment, and it always does in one form or another: "Do you know who gave you AIDS?" "What would you do if you saw the person who gave you AIDS?"
I use my hands a great deal when I speak, so when this question comes up, I say, "I know exactly who gave me AIDS!" When I complete that statement my forefinger is raised as if I were counting the number one. Adolescents, especially, lean forward thinking they are about to hear some titillating gossip. I then take that raised finger and slowly turn it around until it is pointing at my chest.
I accept 100% of the responsibility for the transmission of HIV to me and my subsequently contracting AIDS. Assuming a 12 to10-year incubation period and given my 2007 AIDS diagnosis, it's probable that transmission occurred somewhere around 1995-7. I was living in San Francisco at the time, and, being single, I was living the wild life. In 1995 we already understood very well what we needed to do to prevent transmission of HIV. Nevertheless, I made some poor choices. I knowingly took risks I shouldn't have, and consequently I am paying the price.
I took these risks despite having lived in New York City during the 1980s, and watched members of our community shrivel up and die horrifying deaths. I took these risks even though, when I revealed to my psychotherapist that I was having unprotected sex, he flew into a fit of anger and insisted that I go volunteer at Gay Men's Health Crisis so that I could see the consequences of my actions if I were to continue.
I took these risks despite following my therapist's instructions and volunteering at Gay Men's Health Crisis where I journeyed with several people as HIV destroyed their minds and their bodies, and witnessed their torment and their disturbing deaths. I had seen decline and death before as one pair of grandparents developed cancer, and the other pair of grandparents developed Alzheimer's Disease. Watching people die from the complications of AIDS was entirely different, frightening even.
I took these risks despite being a caregiver for a very good friend dying from AIDS in 1996 when all of his other "friends" abandoned him, just prior to when the combined antiretroviral therapy era began. I accompanied him to doctors' appointments, testing procedures, and treatments. I would help him when he soiled his sheets at night, or he was too weak to go to the refrigerator for a glass of water. My view of HIV and its impact was very close and very personal.
I'm a reasonably intelligent man. I know what I needed to do in order to protect myself, so why did I choose instead to take those risks? My therapist's "assignment" and my subsequently watching the horror that was AIDS in the 1980s had the desired effect, and I began using safer sex practices. However, I was not 100% compliant.
I had an HIV antibody test taken every six months which is the standard recommendation for those who are sexually active. The rapid HIV antibody test did not exist then, and there was a three-week wait between the time blood was drawn and results were given. Every time I had the test, these three weeks were filled with anxiety because I was worried that my failure to practice safer sex consistently had resulted in seroconversion. The results came back negative each time.
Research published in the late 1980s determined that some people had a genetic mutation which made transmission of HIV very unlikely if not impossible. Having one copy of the mutation made one highly resistant to HIV transmission; having two copies of this mutation made one essentially immune to HIV transmission. My repeated negative HIV test results notwithstanding occasional failures to follow safer sex guidelines caused me to begin wondering if I had one or two copies of this mutation. I began practicing safer sex less often, and I continued to have negative test results every six months.
Three years after I moved to San Francisco, I began seeing a new primary care physician. During the intake interview, he asked me if I took the HIV antibody test regularly and what were the results. When I told him I was negative, he responded, "That's very interesting. You're the only gay man I've ever met who lived in New York City or San Francisco for any length of time who is not HIV-positive." Although this was not my doctor's intent, I interpreted his comment as a strong indication that I did indeed have one or two copies of the mutation.
I began practicing safer sex less and less often, perhaps only about half of the time. I even dated men for extended periods who had told me they were HIV-positive, yet I did not consistently practice safer sex with them. I still would have an HIV antibody test every six months, I still would be anxious during the three weeks before the results were returned, and I still always would be told that the results were negative.
One counselor at the testing site I used recognized me from multiple previous visits when he had told me that my results were negative. When he once again informed me that my results were negative, he said, "Obviously you're doing all of the right things, so just keep on doing what you've been doing."
I'm sure the counselor never would have made this statement if he had known what I actually had been doing. However, this statement, in conjunction with repeated negative results notwithstanding poor adherence to safer sex practices including frequent unsafe sex with men known to be HIV-positive, led me to conclude that I was indeed one of the fortunate few who had two copies of the HIV-resistant mutation. I stopped practicing safer sex altogether, and I also stopped getting regular HIV antibody tests. My next HIV antibody test did not take place until more than ten years later when I had been taken to the emergency room on the verge of death.
My story provides several important lessons. First and foremost, believing that one is immune to HIV because of repeated negative results on HIV antibody tests in the context of practicing unsafe sex is an extremely dangerous assumption. No one should ever believe they are immune to HIV infection. Second, medical professionals need to be cautious about what they say to their patients because their words may be interpreted unexpectedly in unhealthy ways. Finally, HIV testing counselors, too, need to be very careful about what they say to those who seek out HIV antibody tests, even those who repeatedly receive negative results. Statements intended to be encouraging and supportive may paradoxically promote dangerous behaviors
Once again I want to stress that I accept full responsibility for putting myself in a situation that allowed HIV to be transmitted to me. Neither the doctor nor the testing center counselor have any responsibility for the manner in which I interpreted their words. My purpose here is to walk readers through the answer to the questions "How?" and "Who?" and "Why?" that I get so often. I wanted to illustrate how I rationalized to myself some foolish behaviors. I also wanted to persuade anyone who thinks they are invincible, that they won't receive the virus even though they are not practicing safer sex, are very, very wrong.
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Last revised: June 4, 2015.