HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
"There are two ways to find out," said the outside of the envelope I received in the mail one day in 1988. "You can get tested. Or you can get sick."
Even though AIDS was not mentioned, I knew right away what this cryptic message meant. I was startled. The message was like an assault, challenging me to rethink my attitude about HIV testing.
What the envelope tapped into were my growing convictions that not knowing my HIV status was filling me with dread, that I might be forced to learn my HIV status by becoming sick, and that recent medical advances made it more logical to get tested. Wouldn't it be better, the envelope suggested, to take control of both my mental anxiety and my physical health by getting tested?
When I opened the envelope, I discovered it was from Project Inform, a San Francisco-based AIDS information clearinghouse that advocated early testing so people could consider early medical interventions and experimental therapies. Project Inform's provocative envelope pointed out that learning I was infected with HIV might be better for me than remaining ignorant. Had this envelope arrived in my mailbox a year earlier, I would probably have dismissed it. But in 1988 my attitudes about the value of HIV testing, like many gay men's, were changing.
By 1988, medical advances in the treatment and prevention of opportunistic infections meant that you stood a better chance of living if you learned you were HIV-positive rather than waiting until you got sick to find out. Aerosolized pentamidine, for instance, had been found effective not only in treating AIDS-related pneumonia but in preventing its occurrence. Azidothymidine (AZT), the first retroviral drug approved by the federal government to combat HIV, appeared to curb the decline of T-cells that leads to immune deficiency.
When reports suggested that AZT might delay the progression to AIDS even in asymptomatic HIV-positive people, it suddenly seemed there was something you could do if you were HIV-positive besides "wait to get sick." Encouraged by these medical advances, AIDS service organizations that had previously been officially neutral about testing, such as the AIDS Action Committee in Boston, changed their policies to a more pro-testing stance.
Alan, who in chapter 5 voiced skepticism about the purpose of HIV testing, remembered how the change in attitude toward testing was the result of work done by scientists and activists:
Through hard work, some good science, and the magic of queer activism, the situation changed. Committed scientists did a lot of important technical work. Activists were out on the street, constantly demanding the impossible and once in a while getting it. I admire the people who had the creativity, the gumption, and the willingness to work hard to actually change the situation.
We appropriated HIV testing, which had undeniably been a tool of oppression, as something that we could use as a tool of liberation, something that could be valuable to us in our lives. There is something magical about that. It took time and imagination to reconceptualize HIV testing. But lots of people's lives have been improved by that activism. I don't want us to ever diminish that in our minds.
When I asked the men I interviewed what led them to get tested, many -- like Robert in chapter 4 -- cited advances in medical knowledge as one impetus. But there were many other reasons for getting tested as well.
Some men I interviewed got tested because of sexual encounters they felt might have put them at risk. Others tested because they were experiencing symptoms of illness and wanted to rule out HIV as a cause. Some tested because a former or current partner had tested HIV-positive or had been diagnosed with AIDS. "Ex got AIDS," was the stark sentence one person used. In these cases, people often expressed feeling an urgency about getting tested because of the closeness with which AIDS had hit home.
Having sexual partners or friends test HIV-negative was also a reason for getting tested. Watching others test negative helped some people gain the courage to get tested themselves.
Other reasons for getting tested involved a desire to plan for the future. These included getting tested to determine if conceiving a child was a possibility, getting tested before embarking on a graduate degree program or other career change, and getting tested before assuming a mortgage on a house. "I was tired of worrying, and I wanted to get on with my life," said Audrey, a 32-year-old bisexual manager from Troy, Michigan, voicing what I heard from many men as well. "If I wasn't HIV-positive, it was time to do some important stuff, like taking better care of my health and saving for retirement."
The ability to envision a future and plan for it was one of the casualties early in the epidemic. For those who didn't know their HIV status and assumed they might be HIV-infected, it was natural to live in the present and not give much thought to the future. Testing negative was one way of reclaiming a future.
Many men described the state of not knowing their HIV status as a kind of limbo -- in which they had to continually imagine they might be infected -- and mentioned that this was psychologically tiring. Taking an HIV test for them was a way of moving beyond that limbo. "Generally, I want to know if something is wrong. So not knowing if I was HIV-positive or not was unpleasant," said Harold, a 28-year-old computer scientist from Frederiksberg, Denmark. Scott, 24, who in chapter 3 described his alarm at finding an ink splotch on his skin and thinking it was Kaposi's sarcoma, recalled a phrase that characterized for him the nagging nature of wondering whether he was HIV-positive: "If there's a hornet in the room," he said, "I want to see where it is."
A few of the men I interviewed told me that once they had decided to get tested, the procedure itself went without much trouble. They had little anxiety going for the test or waiting for the results. But this was not the case for most of the men I interviewed. When I asked what it was like to get tested for HIV, I often heard stories of great personal courage as people described facing intimidating anxiety and yet mastering it.
Todd, a 26-year-old composer and pianist, was typical in not telling many people that he was going for an HIV test. He told a close friend, he told his guitar instructor, and he told his mother:
Those were the only three people I told, the fear being that if I was positive I didn't want a lot of people knowing about it. I told only people that I knew I could trust. Testing was probably the scariest thing I have ever been through. It was such a nerve-wracking experience for me that I needed the support during the six weeks I waited for the results. I went to the Red Cross in Baltimore and it was a six-week wait.
By not telling many others that he was getting tested, Todd was unable to learn from anyone who had been tested what the procedure was like. As a result, he went into the test not quite knowing what to expect:
I was very naive. I knew nothing. I always assumed that if you go to have your blood taken, you don't eat. So I didn't eat anything all morning. I was terribly nervous, I went and got my blood drawn, and then I passed out from lack of blood sugar. The woman who was taking my blood thought I was a drug user having a flashback. It was a nightmare. I woke up on the floor with all these people standing over me. Thank God the needle was out of my arm.
Todd's experience illustrates that getting tested, because it can be so anxiety-producing, often leaves testers in an emotionally vulnerable state. Not every testing experience is as traumatic as the one Todd described. Sometimes, humor is allowed to penetrate what would otherwise be a daunting event. Nathaniel, 34, whose narrative appears in chapter 20, gave me an example from his own experience.
Although he worked as an HIV educator and test counselor in an agency that offered anonymous HIV testing, Nathaniel chose not to get tested at his workplace. "I didn't want to deal with my coworkers," he said, "and I didn't want to go to some of the other places around town, because I knew counselors there too." Nathaniel decided to get tested in the suburban community he lived in north of Boston:
And was that a different experience. My counselor was a nurse, but she didn't know a whole lot about HIV. She was like a character from the Bob Newhart Show: fumbly, scattered, and cute. She said, "Oh, you probably know a lot more than I do about this." And she was right.
It was so by the book that I kept laughing to myself. When she asked, "Do you have annual intercourse?" I said, "Goodness, no, we have sex much more often than that." I tried to keep a straight face. She looked at me and said, "Whaaat?" I wasn't trying to make fun of her. It was just very amusing.
Lying there as she was drawing my blood, I felt a little sick, because I hadn't had breakfast. She said, "Here, have a Ding-Dong." And when I got up I blanched, so she said, "Ah, I'll make you a glass of Tang." I thought, "I'm almost glad this is happening, because I can laugh about it."
Although Nathaniel's counselor was doing her best to make him comfortable, the suburban testing experience was so different from Nathaniel's work in an urban agency that it provided a kind of comic relief for him, defusing the tension around testing.
Waiting for the results of an HIV test, which can take anywhere from a few days to a number of weeks to be processed, depending on the testing site, was almost uniformly described by the men I interviewed as a nerve-wracking experience.
Anxiety during the waiting period is not necessarily related to whether the person tests HIV-negative or HIV-positive. Both Sandro in chapter 2 and Paul's partner Brad in chapter 6, for example, experienced anxiety waiting for their test results, even though one later learned he was HIV-negative and the other that he was HIV-positive. Perhaps this is because most people anticipate that they will be HIV-positive.
"I thought I was going to die. Literally. I had my funeral planned out," said Blake, 33, a library clerk from Portland, Oregon. "It's morbid, I know, but I wanted it to be right, especially the music. I did this because I felt that when I walked into the office for the results I wanted to be ready to fight the HIV and not think about dying. I even came out to my parents, because if I was positive I didn't want to tell them at the same time that I was gay and HIV-positive."
Alice, 40, the HIV-test coordinator who in chapter 3 discussed how AIDS anxiety manifests itself in physical symptoms, told me that the waiting period often encourages people to think about their mortality. "Some people go further than others. They start writing their will, planning who should take care of their children, getting their travel brochures out, all that kind of stuff." She went on:
Then there are the people who say they've never noticed it before but suddenly everything is HIV-focused wherever they turn. That's all they can see, and that's all they think about the whole week. They feel it's a bad omen and that there's going to be a bad answer when they come in.
Alice told me this ominous thinking was most problematic for people who did not have support from friends during the testing process. "When people have support from friends during testing," she said, "their attitude is that no matter what happens, whether they are positive or negative, there's going to be someone to care for them. They're going to have help from someone." For those individuals who have thought about testing for several years on their own, never having spoken to anyone about it at all, Alice said, testing is very difficult: "Without the support, I don't see them feeling a lot of hope."
Many people are able to pass the waiting period without much anxiety, until the time to get their results approaches. "The anxiety comes in when it's time to make the phone call to find out if the test result is ready," said Alice. "When we say their result is ready, that's the start of it. The heart starts pounding, all the anxiety comes back between then and the time they show up. They say driving down the road that connects to our buildings is really bad. Some people have said to me that they've sat in the parking lot and then gone back home. They just could not come into the building. That was the worst part of it."
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Conclusion · Appendix A B C · Notes · Contributors