For gay men who are HIV-negative in a community devastated by AIDS, survival may be a matter of grief, guilt, anxiety, and isolation. In the Shadow of the Epidemic is a passionate and intimate look at the emotional and psychological impact of AIDS on the lives of the survivors of the epidemic, those who must face on a regular basis the death of friends and, in some cases, the decimation of their communities. Drawing upon his own experience as a clinical psychologist and a decade-long involvement with AIDS/HIV issues, Walt Odets explores the largely unrecognized matters of denial, depression, and identity that mark the experience of uninfected gay men.
Odets calls attention to the dire need to address issues that are affecting HIV-negative individuals—from concerns about sexuality and relations with those who are HIV-positive to universal questions about the nature and meaning of survival in the midst of disease. He argues that such action, while explicitly not directing attention away from the needs of those with AIDS, is essential to the human and biological well-being of gay communities. In the immensely powerful firsthand words of gay men living in a semiprivate holocaust, the need for a broader, compassionate approach to all of the AIDS epidemic’s victims becomes clear. In the Shadow of the Epidemic is a pathbreaking first step toward meeting that need.
About the Author
Walt Odets is a clinical psychologist in private practice in Berkeley, California. A member of the AIDS Task Force of the Gay and Lesbian Medical Association, he has spoken and written frequently on the psychosocial issues of HIV-negative men and AIDS prevention for gay men. He is also an editor and contributor for the series AIDS Management: The Role of the Mental Health Community and a contributing author to Therapists on the Front Line: Psychotherapy with Gay Men in the Age of AIDS.
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In the Shadow of the Epidemic
Being HIV-Negative in the Age of Aids
By Walt Odets
Duke University PressCopyright © 1995 Duke University Press
All rights reserved.
Why We Need a Book about Being HIV-Negative
Look at me! Orange icing no longer tastes the way it used to, the ride to the plaza is no fun, nothing satisfies, except sometimes the apricots which blaze reminiscently of your hair & now I have put hundreds of copies of your photograph up on my wall (I make myself look at each one although they are all the same), the word "betrothed" appears in my silliest dreams, and my hands no longer strike me as a very ordinary man's hands. How peculiar that such a dangerous thing might happen in love. When my hands no longer strike me as ordinary, it seems inconceivable what might next occur.—Ippy Gizzi, from Letters to Pauline
During the past decade, the gay communities in the United States have made a sad and lonely expedition into deep space, a perilous undertaking against an apparently indomitable enemy that seems not even close to finishing its destructive work. Long before this expedition began, astronomers had hypothesized a theory about dark companions: invisible planets that travel unseen beside visible planets, and explain observed gravitational phenomena that cannot otherwise be understood. Today there are many dark companions following gay men on their journey through the AIDS epidemic, lurking in the complex shadows of our perceptions, our denied perceptions, and other corners of our inner space.
One dark companion—still only poorly perceived—is the complex social and psychological epidemic among those gay men who are still uninfected with HIV and might survive the AIDS epidemic itself. We in the gay communities have not completely ignored this issue. But we have denied and underestimated virtually every aspect of the AIDS epidemic: how long it would last, how many it would take, how awful the process would be, and what legacy it would leave for survivors. Our attention to the needs of survivors—who are mostly HIV-negative and are the primary subject of my book—has been based on a huge underestimation of the nature and severity of the problems facing these people. As a result, we now have in the gay male and bisexual communities of uninfected men a second, completely uncontrolled epidemic—a psychological one—that threatens the health and welfare of millions of Americans.
This psychological epidemic most severely affects an unknown number of bisexual and gay men who are not (or reasonably believe they are not) infected with HIV. This is potentially a huge population. Although levels of HIV infection seem to be increasing, current figures from the San Francisco Department of Health continue to suggest that about 50 percent of San Francisco's gay men are still uninfected with HIV. Nationally, the percentages of uninfected gay men must be much higher, especially in nonurban areas, and it may be reasonably conjectured that in the United States there are as many as five to ten uninfected gay men for every gay man who is infected. Such figures are shocking—because of their imprecision, and because they remind us how many men are infected. But they also shock because, at a time when many within gay communities feel—if not actually think—that everyone is dead, dying, or at risk of dying of AIDS, we are also reminded how many men are still uninfected.
These uninfected gay men with psychological issues comprise the group often described as the "worried well." But more than a decade into the AIDS epidemic itself, there are many among these worried well who have a huge part of their lives and feelings wrapped up in the tragedy of AIDS. In many cases, negatives have a psychological experience—a personal and social identity—that is more like that of a sick or dying man than many who are HIV-positive. There is, however, an anomaly here: a "worried well" in the grips of its own epidemic. The very term is a collusion with many gay men's own denial about the effects of the AIDS epidemic. The San Francisco mayor's office has said that by 1990 more San Franciscans had died of AIDS than all the San Franciscans who died in the four great wars of the twentieth century, combined and quadrupled. And most of these deaths are from within the gay communities. Is it conceivable, in a social event of this magnitude, that survivors in these communities might be merely "worried" or that they could be "well"?
All gay men live with HIV and AIDS, whether the virus now exists in their own bodies or in the bodies of those they love, live and work with, identify with, and sometimes fear. Being gay means being profoundly affected by the epidemic, and for those who feel they are not, I can only again mention denial. Denial not only exists within the individual, but within society at large. Broad social denial colludes powerfully with the denial of those who live in the middle of the epidemic and who must protect themselves from seemingly unbearable psychic pain. Denied or not, being gay and being uninfected is now a condition, not the absence of one. Being uninfected is a personal and social identity, like being gay, and it must be similarly clarified, consolidated, and acknowledged in the world. Being uninfected thus involves precisely the kind of "coming out" process that being gay does. Ed Wolf, longtime San Francisco AIDS worker, was the first to explicitly describe this idea to me:
Early on in the epidemic we all were all running around trying to take care of people with AIDS: we were running our heads off. And one day sitting in a hot tub with four other guys who were all talking about their medication—they all had AIDS, except for me—I started thinking, that I'd never discussed my serostatus with any of them. I'm really in the closet about this—about being HIV-negative. I'm ashamed to admit this to them. It's really like coming out of the closet all over again: Hey, I'm HIV-negative, this is who I am, this is me, and we can't be friends unless you know about that. I thought when I came out the first time—as gay—that this was the big thing. But now I realize that I've got to come out all over again, and I've just been denying to myself the real importance of doing that.
Personal denial like Ed's has been almost universally supported within the gay communities, which needed to direct their resources to infected men. But we within gay communities have also lacked an explicit understanding of HIV-negative issues, and, in many cases, the individuals in charge of public policy and AIDS education programs have been exercising personal denial about AIDS and what it has meant to them. One unexamined assumption underlying much of our denial is that AIDS is simply another medical issue, like cancer. Those without the disease are not part of the "affected population." But the AIDS epidemic is now an event—despite its inequitable concentration in relatively discrete communities—that keeps company with the two World Wars and the Great Depression as a psychosocial event of twentieth-century world history. In such events it is not only those on the front lines, but the entire society, that is ultimately involved in important human ways.
Why We Have Denied the "HIV-Negative" Condition
On & on as if hell were never ending (and it is, by legend, and I'm in it) or more never ending even than heaven, its obese rival. Standing here in hell I have recounted my purposes for life over and over with as much rhapsodic anguish as a little candle, blessing myself as I touch my forehead with the back of my hand, that I at least am not a child of this house, these ridiculous half-men who have only the anus half left and that is what they show me.—Ippy Gizzi, from Letters to Pauline
In the first decade of the epidemic, a period characterized by shock, despair, and emergency, it has often seemed selfish, inappropriate, or simply ridiculous for the uninfected to have any important feelings about themselves. Feelings about oneself seemed the exclusive right of those who were infected, sick, or dying, particularly if the feelings were going to demand time or resources. In 1988, before virtually any public recognition of an HIV-negative identity—although even then it was a well established reality—I participated in a panel discussion titled "AIDS and Seronegative Gay Men." It was astonishing to see the evening devoted to a discussion of those with HIV and AIDS. Virtually the entire panel and participating audience drifted irresistibly into an authentically concerned, but programmatically inappropriate, analysis of the problems of those dealing with AIDS itself. Those without HIV could not experience their feelings about their own lives as worthy of discussion or worthy of the concern and attention of others. This is an attitude widely felt in the gay communities of uninfected men—and is sometimes supported by the resentment or anger of HIV-positives—and it has contributed to the broadly based denial of HIV-negative issues.
In many ways, uninfected men have accepted a structure like that of families in which one child is treated as healthy, "good," and unproblematic. The parents, absorbed by their own problems—including another child, who is perceived as sick or needy—come to take the good child and his apparent needlessness for granted. The entire family's organization—the distribution of responsibilities and structuring of relationships—comes to rely on the good child's apparent lack of needs, and, often, on his overtly caretaking role. When the good child does finally express needs, his beleaguered parents become angered by what seems a betrayal. Uninfected men have become, in the haunted, beleaguered family of the gay and bisexual communities, something like the "needless" child.
During the first years of the epidemic, there was good sense in gay communities adopting such an arrangement with its needless children. Infected men suffered and died in ways that left one speechless. Resources were limited beyond reason, given the wealth of this and other nations. When and where demands on resources by the infected and the uninfected have overlapped, it has seemed unimaginable to direct them to the uninfected. This is all true, but it does not address the fact that we have not even acknowledged the problems of the uninfected, much less clarified them in useful ways. Furthermore, there are resources available to the uninfected that will not take away from the infected. As one example, few psychotherapists can work exclusively with HIV-positive men, both because the HIV-positive community seeking psychotherapy is too limited and because the work is too emotionally difficult. Therefore, therapists working with gay men in general have an opportunity to work with uninfected men, and this mandates some clear definition of their problems. But a report from the San Francisco AIDS Foundation makes public policy regarding survivors clear: "There appears to be no plan for assisting the gay community or city [of San Francisco] at large in coping with the resulting psychological consequences [of the AIDS epidemic].
There is a second important reason that the distress of uninfected men has been denied. We now often hear about "survivor guilt," though much of what is meant by the term is unclear. It is, however, certainly one of the cornerstones of the psychological epidemic among uninfected men, and it has played a central role in the denial of psychological distress among negatives. If an individual feels ambivalence or guilt for having simply survived those dead from AIDS, imagine how impossible it will be to think and talk about the kinds of feelings now seen routinely in uninfected men: that they are depressed, anxious, and lonely in their "wellness"; they are having a hard time surviving, and for many survival is so difficult they sometimes wish they had not survived and sometimes hope they will not. Despite the contribution of survivor guilt to often disabling anxiety and depression—and, in complex ways, to unprotected sex—such feelings are difficult to think and talk about, and are virtually impossible to ask for help with in the middle of a disaster like the epidemic. Woody Castrodale, a San Franciscan who has thought deeply about HIV-negative issues, wrote me about an HIV-negative group he facilitated, and the difficulty the group had addressing its purposes. Clearly, feelings of survivor guilt are described here.
Thank you for sending me a copy of your paper, The Impact of AIDS on Uninfected Gay and Bisexual Men ... all I had was the first four pages of an older version of the paper ... which I am in the habit of reading to the group every four weeks or so, just to remind us all of our mandate, or "purpose" in meeting ... It serves to wake us up, once again, to the fact that we do have lives of our own to live.
It is so easy, and in some sense comfortable for us to slip into talking about friends who are sick, friends who are dying, or partners who are struggling with HIV. The drama of death and sickness attracts our attention. And I have to gently ... remind them to talk about themselves, to address directly the issues of what it feels like to be living as an uninfected gay man. Reading the beginning of your paper together, as a group, helps [us] comprehend that our own lives are real, and that we need to talk about and express ideas which are "politically incorrect" in the outside world.
Many different issues continue to arise in the group. One which seems to always be there in the background is the issue of telling the truth about how we really feel, as opposed to how uninfected gay men are "supposed" to feel and act in the world. We have been startled at times to realize that how we actually feel, when we express it in words, comes out sounding not so nice, not so proper, and quite "incorrect."
But the expressing of our actual feelings has had some obvious effects, which almost everyone in the group has mentioned: most notably the reduction of anxiety and guilt feelings.... What I have noticed, myself, as facilitator, is that over a period of months certain men have "come to life" again, woken up, started to seem less confused, more alive, more actively engaged, and less depressed. And these things happen to me, also.
It is not only the understandable draw of the AIDS epidemic itself, but survivor guilt—experienced as discomfort with a life that one values and wishes to improve, or with having a life at all—that motivates the "drift" Castrodale talks about. The group's difficulty with trying to remain on its own HIV-negative issues is apparent in the need for a monthly rereading of four pages that describes nothing more than what group members are themselves experiencing. Uninfected men routinely have difficulty recognizing, acknowledging, and addressing their own problems, even when those problems are obvious and close to destroying viable lives.
That complex and difficult but largely denied feelings exist commonly in gay HIV-negative communities should be apparent to any psychologically astute observer. Because so much denial has been exercised against the evidence, it is worth providing some data on the subject. Much literature—though most of it more concerned with issues of bereavement and grief than with HIV-negative issues per se—now exists to document a psychological epidemic among uninfected men. James Dilley, director of the University of California at San Francisco's AIDS Health Project, summed up the situation in 1988:
A critical concern is the impact of bereavement and anticipatory grief on a variety of populations: PWA's [persons with AIDS], PWARC's [persons with AIDS-related complex], seropositives and those in their social networks [emphasis added].... Indications are that people undergoing stress of this magnitude show high levels of psychological distress, as well as physical illness. Among those harmful health outcomes are demoralization, a sense of helplessness, sleep disorders, irritability, increased use of tranquilizers and sleeping pills, and reliance on mental health and medical care.
Excerpted from In the Shadow of the Epidemic by Walt Odets. Copyright © 1995 Duke University Press. Excerpted by permission of Duke University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
A Word About the Writer and the Reader,
Chapter 1: Why We Need a Book About Being HIV-Negative,
Chapter 2: The Psychological Epidemic,
Chapter 3: Survivor Guilt and Related Family Matters,
Chapter 4: Life in the Shadow: Loss and Mourning,
Chapter 5: Being Outsiders: The "HIV-Negative" Identity,
Chapter 6: Being Alone,
Chapter 7: Being Together: The Relations of Positives and Negatives,
Chapter 8: Being Sexual: The Politics and Humanity of Gay Sex in the Epidemic,
Chapter 9: Being Here: Other Kinds of Survival,