HIV-Negative: How the Uninfected Are Affected by AIDS
Copyright © 1995 by William I. Johnston
New York: Insight Books-Plenum Press
HALFWAY ALONG THE TRAIL from Scout Lookout to Angels Landing in Zion National Park, Utah, the path narrows along an exposed sandstone rib so that hikers must walk single file. On the right side, the rock underfoot tumbles hundreds of feet into Refrigerator Canyon. On the left, it drops a thousand feet to another canyon floor, where the North Fork of the Virgin River meanders.
I hiked this trail with my younger brother a few years ago, and when we came to this place he went first. He moved effortlessly across, using a step carved into the rock like the stairs of a Roman amphitheater. As I followed him, I found myself crouching and moving slower and slower, until my knee joints began to creak. A single misstep, I realized, could send me plummeting to my death. I froze.
"Just don't look down," my brother called out as he turned and saw me immobilized with one foot on the stone step.
Poised at this juncture on the trail to Angels Landing, I saw the ground hundreds of feet below me on both sides. It barely seemed to move as I walked, much as the moon hardly appears to move as you cross a field at night. Heeding my brother's advice, I glanced up toward him. Even so, my peripheral vision continued to register the canyon floor far below.
Along the trail to Angels Landing, chains are embedded in the stone as handrails to assist hikers. My brother, nimble and sure-footed, hardly touched the chains. I clasped the chains and pulled myself along one step at a time. I envied my brother's poise.
"Don't worry so much," he said to me. "Just stand up and you'll balance fine."
"I'm not afraid of heights," I yelled back as the wind whipped across the space between us. "I'm afraid of falling."
Gay men who test HIV-negative often find themselves fearful and immobilized much as I was on the trail to Angels Landing. When we learn of our HIV-negative status, we feel relieved, redeemed, saved. And yet often this relief is short-lived. The possibility of becoming HIV-positive lingers in the periphery of our minds just as the canyon floor lingered in the periphery of my vision as I walked along the trail in Zion National Park.
Some gay men have little difficulty adjusting to the knowledge of their HIV-negative status. Like my brother, they walk nimbly along the trail with assurance. Others of us, however, are not so fortunate. Our position seems precarious. One misstep, one moment of carelessness during our lovemaking, we fear, might send us hurtling to an unwelcome fate. Some of us are convinced that we cannot escape becoming HIV-infected, just as we cannot escape the inexorable force of gravity. Often these feelings lead to a kind of sexual and emotional immobility akin to the immobility I experienced on the trail to Angels Landing.
I suggest the metaphor of falling because it expresses the one-way nature of HIV infection. According to our current understanding ofHIV, the uninfected can become infected but the infected cannot become uninfected. Being HIV-negative -- unlike being HIV-positive -- is not necessarily a permanent position. It is unstable, and this instability makes it difficult for many HIV-negative gay men to feel secure.
I sympathize with my HIV-positive friends who object to equating HIV infection with falling. The metaphor of a fall is sometimes used to imply that those who have fallen are inferior to those who have not fallen. Good is equated with up, and bad with down, much as heaven and hell have been visualized in spatial terms. Most of my HIV-infected friends do not view their HIV infection as evidence of a moral lapse or a fall from grace. In many cases, their HIV infection occurred before the mechanism of HIV transmission was understood. And even if their infection occurred later, many people find it unhelpful to dwell on the question of whether they could have prevented it had they been more cautious.
Even if we avoid adopting a moralistic hierarchy, those of us who learn we are HIV-negative often find ourselves freighted with a moral charge: if we become infected in the future, we will have to face those who reprove us because "we should have known better." The responsibility to remain uninfected is a burden whose psychological costs are not fully understood.
Before I got tested for HIV, I did not imagine that HIV-negative gay men faced unique psychological and social issues. I had been a volunteer for an AIDS hot line run by the AIDS Action Committee of Massachusetts since 1987, so I knew that many gay men felt anxiety about HIV and wondered whether they should be tested. But I had not given much thought to the ways in whichHIV testing might raise different issues for the HIV-positive and the HIV-negative.
Like most people who consider HIV testing, I supposed that testing negative would eliminate my anxiety about HIV and AIDS. I was surprised, therefore, to discover when I tested negative in 1989 that my concerns about HIV were not resolved by testing. On the contrary, testing HIV-negative brought forth new concerns I had not predicted.
Finding out I was HIV-negative put me in a new position -- psychologically, socially, ethically, and philosophically -- a position very different from not knowing my HIV status. Suddenly I began asking myself all kinds of new questions: Do I believe my test results? Why don't I feel like telling other people my "good" news? Will knowing I am HIV-negative influence my sexual behavior? How should I act with HIV-positive friends? Should I ask sexual partners about their HIV status? How will I feel about myself if I become HIV-positive?
I did not know if other men who tested HIV-negative were also asking themselves these questions. Then in February 1991, a meeting was held in Boston for HIV-negative gay and bisexual men to talk about their concerns. The meeting drew almost 90 men, clearly revealing that an unmet community need was being addressed. I attended that meeting and later became a facilitator of the group when it continued to meet monthly at the Fenway Community Health Center in Boston.
I participated in the Boston HIV-Negative Support Group because I wanted to hear what other HIV-negative gay men were thinking. I was relieved to learn that I was not alone in my concerns. Other men too were experiencing anxiety, grief, and hopelessness in the face of the epidemic. Other men too were tired of pretending they were coping well in the midst of an epidemic. Other men too were experiencing numbness as a result of repeated loss, and worrying that they might not be able to remain uninfected for the rest of their lives.
The support group revealed to me that many issues remain unresolved -- or are brought forth -- by a negative HIV test. Although most gay men report relief at learning they are HIV-negative, there are many other responses, including surprise, disbelief, hope, doubt, guilt, and grief. The variety of those responses is the subject of this book.
Why did it take nearly ten years for the issues facing the HIV-negative to become apparent? One practical reason stands out. During the first decade of our response to the AIDS epidemic, we focused energy and resources on supporting HIV-positive people and researching ways to combat HIV and its associated infections. This focus was -- and continues to be -- understandable and appropriate. One unforeseen consequence of this focus, however, is that the effect of the epidemic on HIV-negative people remains poorly understood.
There are also historical reasons why the position of being HIV-negative has remained unexamined until recently. HIV testing did not become widely available until 1985, and when it did, many gay men avoided testing because they feared discrimination and there were no treatments for asymptomatic HIV infection. One consequence of this early reluctance to be tested was that both infected and uninfected gay men inhabited the same position. In the absence of information about HIV status, we all had to assume that we might be infected and behave accordingly. Safer sex guidelines were developed that treated all individuals the same. The psychological result was that both infected and uninfected gay men were "living with AIDS" in much the same way. There did not appear to be a need to discuss the position of the HIV-negative individual.
When therapeutic advances in the late 1980s made early knowledge of one's HIV-positive status more useful, more gay men got tested. As more people learned they were HIV-negative, the position of the HIV-negative individual became clearer, and social and sexual divisions based on HIV status were brought into stark relief.
Even so, there remained powerful reasons why the issues facing the uninfected were not addressed. Sometimes HIV-positive people disparaged support networks for the uninfected: "What could HIV-negative people possibly talk about? That sounds like a group of rich folks sitting in a circle deciding how to spend their money." Far more influential than such comments, I believe, was the survivor's guilt commonly found among the HIV-negative. Many of us felt we must not dwell on our own problems when those of the HIV-positive were so much greater. After all, shouldn't testing HIV-negative be a cause for celebration? What did we have to complain about, when we were not facing the challenges that the HIV-positive must face? Such feelings for a long time kept HIV-negative gay men from recognizing that they have unique mental-health concerns that need to be addressed.
I believe gay men will pay dearly if we do not begin addressing HIV-negative issues directly. Not only will we see increased rates of new infection among HIV-negative gay men, but what psychotherapist Walt Odets has called "the silent epidemic" -- widespread community depression among the HIV-negative -- will continue to damage our physical, emotional, and spiritual health. I am dismayed by the thought that gay men might self-destruct because we cannot figure out how to live well.
By the end of 1991, I realized that the Boston HIV-Negative Support Group had been profoundly helpful to me. It had provided me a window into the lives of other HIV-negative gay men, helped me feel less isolated, and allowed me to explore and accept my complicated feelings about being HIV-negative.
Because the group had been so useful to me, I imagined that a book in which gay men offered their views about being HIV-negative could be useful to others who did not have a similar forum to discuss these issues. Such a book might begin a much-needed discussion about how HIV-negative gay men can sustain themselves during the continued onslaught of the AIDS epidemic.
In 1992 and 1993 I interviewed more than 45 HIV-negative gay men from the metropolitan Boston area. My intention was to gather information about the psychological and social issues facing gay men who have learned they are HIV-negative.
During my two-hour interviews, I used a sequence of questions that followed a roughly chronological order, exploring the past, present, and future. In the first part of each interview, I asked people questions about their past experiences of the AIDS epidemic and HIV testing:
In the second part of each interview, I asked people to discuss how learning they were HIV-negative influenced their present social and sexual relationships:
In the third part of each interview, I asked people to discuss their concerns about the future, including retesting, seroconversion (becoming HIV-positive), and survivorship:
I structured this book by alternating interview-based chapters and thematic chapters. The even-numbered chapters are based on individual interviews selected for their interest and insight, and the odd-numbered chapters (aside from the first and last) are based on general themes I uncovered during my interviewing. The thematic chapters follow roughly the same sequence as my interview questions. I have tried when possible to place the interview-based chapters so they comment upon the surrounding thematic chapters.
The people I interviewed, unless otherwise indicated, were HIV-negative gay men from metropolitan Boston. Many of them have participated in the Boston HIV-Negative Support Group. As participants in a support group, they may exhibit greater anxiety or more caution about HIV than others. Ages ranged from 23 to 52. Other people I interviewed were professionals in the field of AIDS, including HIV-test counselors and public-health educators.
To supplement my research, I posted a list of interview questions on the Internet. I got over 50 replies, mostly from men but a few from women. Responses came from California, Colorado, Delaware, the District of Columbia, Illinois, Indiana, Iowa, Kentucky, Massachusetts, Michigan, New York, Ohio, Oregon, Pennsylvania, Rhode Island, Texas, Virginia, and Washington. Other responses came from Australia, Canada, Denmark, and the United Kingdom. Ages ranged from 19 to 48. These replies reiterated many of the things I had learned in my interviews.
Because the people I interviewed and the replies I received via the Internet were not a random sample, it would be unscientific to conclude that they are representative. I believe, however, that they voice concerns shared by many. To protect privacy, I have in most cases changed the names of my sources.
The principal audience for this book is HIV-negative gay men. In addition, I trust this book will appeal to many of the following:
Readers who are not gay themselves but whose lives are affected by HIV may gain something by considering what gay men have learned about being HIV-negative. To survive this epidemic, we must learn from each other. This book raises issues that resonate with us all. It is about how we live now: how we experience and define the meanings of sexuality, vulnerability, mortality, and responsibility.
I hope the variety of voices in this book allows readers to recognize the wide range of attitudes and responses to the HIV epidemic. Readers may find some of their own thoughts reflected in these voices. I hope they also find new food for thought in other people's experiences. One theme that surfaced as I interviewed people is that when we see how other people have struggled with and resolved difficult issues we are better able to confront these issues ourselves.
As I climbed to Angels Landing with my brother, I was encouraged by the hikers returning from the summit. Their broad smiles and murmurs of sympathy as they saw me clinging desperately to the rock encouraged me in a way that my brother's poise had not.
Listening to someone telling me not to worry because I test negative for HIV is like listening to my brother telling me not to worry about falling off the trail to Angels Landing in Zion National Park. Although well intentioned, it doesn't really help. Fears and anxieties cannot always be rationally controlled. But listening to others who have experienced fears and found ways to manage them may help.
I did, after all, make it to Angels Landing. On my way back, I had more confidence as I negotiated the trail. I remembered my initial fears and was not entirely free of them, but I was better equipped to manage them. I passed again the step carved into the rock. From this direction, the step looked like a seat. I paused to sit there for a moment, secure in the niche, and was able to look to my left and right without fearing I would fall.
This book is like the niche carved into the rock at the narrowest part of the trail to Angels Landing: it can serve either as a step or as a resting place. It is designed to act as a step to support people who have recently tested HIV-negative and as a resting place for those who have made that journey and want to sit for a moment, reflect on their experience, and regain strength.
I hope this book helps people who learn they are HIV-negative negotiate their trails without the fear of falling. Or if with the fear, then without the fall. We need ways to find our balance before we can move on. The HIV test provides for some of us a chain to cling to, helping us move slowly along our path. But an excessive reliance on it may inhibit our progress. We cannot learn to trust our inner sense of balance if we never stand up.
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Conclusion · Appendix A B C · Notes · Contributors