Into the Third Decade of AIDS: Books on HIV and Mental Health

New York City-based social worker Michael Shernoff has been among the most prolific authors of practical handbooks on the mental health aspects of HIV/AIDS. A pioneer of the gay men's health movement, Shernoff's work as a counselor, author, and editor has covered the range of issues from chemical dependence to clinical practice to mourning the loss of a partner to the shaping of public policy. In this essay, he shares firsthand with Body Positive readers how his work has been integrally related to his life as an HIV-positive gay man. He also introduces the individual books and suggests audiences that may benefit from reading each volume.

When I applied for admission to Master's of Social Work (MSW) programs in late 1974, my ambition was to receive graduate training in order to provide quality mental health services to the gay men's community. I have been very blessed to have had a career doing exactly that. By the time that AIDS first began to cut its deadly swathe through the gay men's community, I had already been in practice for several years and had been an activist in the gay health care movement. One fact that is now largely forgotten is that over a decade of activism by queer health care activists preceding the onset of AIDS, was the foundation upon which the gay community's organizational response to AIDS was able to build so quickly.

In the late 1970s a man in my practice was becoming inexplicably ill. A gay man who also used cocaine intravenously when he partied, he had painfully swollen lymph glands, fevers of unknown origin, and was wasting away due to having lost his appetite and uncontrollable diarrhea. His physician was baffled by this man's condition until he eventually died. A few years later, in hindsight, it was obvious that he was the first person with symptomatic HIV with whom I worked.

Mental Health Pioneers

In the summer of 1982 after Gay Men's Health Crisis (GMHC), the world's first community based AIDS service organization was founded, I was asked by Diego Lopez, the social worker coordinating mental health services for the fledgling GMHC to become a volunteer and donate time and my clinical skills to help the men in my community who were sick with what at the time was known as GRID, (Gay-Related Immune Deficiency). Thus began my volunteer involvement in providing services to people living with HIV and AIDS. For the past twenty years my commitment to serving people living with and affected by HIV has been a source of great personal and professional pride. As an HIV-positive individual who has been lucky enough to be a long-term non-progressor I feel an ongoing obligation to donate professional expertise to the continued fight against HIV and AIDS. At the present time, writing and doing professional trainings are the ways I volunteer.

Diego was one of first mental health professionals in the United States to respond to AIDS. Others in that first generation of AIDS mental health professionals were: Dr. Stuart Nichols, Dr. Bertram Schaffner, and Dr. Robert Remien in Manhattan; Dr. Lori Weiner, then at Memorial Sloan-Kettering Cancer Center in Manhattan; Gillian Walker and Dr. John Patten at New York's Ackerman Institute; Mel Rosen, Dr. Michael Quadland, Dr. Ken Wein and Peter Seiford at GMHC in New York City; Caitlin Ryan, then in Atlanta; Dr. James Dilley, Barbara Faltz, John Acevedo, Dr. Peter Goldblum, Dr. Leon McKusick and Judy Macks, in San Francisco; Bill Scott in Houston; Paul Clover in Austin; Howie Dare in Dallas; David Aronstein in Boston; Dr. Gary Lloyd in New Orleans; Dr. Wilfred Van Gorp and Steve Buckingham in Los Angeles; Bill Bailey at The American Psychological Association in Washington, D.C.; Anthony Hillin in London; and Dr. Marshall Forstein in Boston.

Among the first individuals to begin to educate and counsel injection drug users about AIDS were social workers Luis Palacios-Jiminez and Edith Springer working at the Van Eten Methadone Maintenance treatment center in the Bronx. Some of these individuals are still working with people with HIV and AIDS, but too many others are now dead, themselves casualties of the disease.

While the men and women named above were among the original pioneers of articulating and serving the mental health needs of people living with HIV and AIDS and their loved ones, there have been and remain thousands of other dedicated mental health professionals all over the world insuring that the emotional and psychological needs of all people living with and affected by HIV and AIDS are met in sophisticated and sensitive ways. From the early 1980s, it became clear that serving individuals and populations impacted would require an integrated biopsychosocial approach. Today, even with combination therapies and sophisticated prophylaxis against opportunistic infections, HIV is still devastating individuals, families and communities around the world. The books I edited and authored have all been efforts to assist AIDS-care professionals, volunteers and students with addressing the emotional and psychological issues related to living with HIV.

HIV Among Drug Users

In 1982 I was hired as the Counseling Supervisor at Greenwich House West Methadone Maintenance Treatment Program, located in Manhattan's Chelsea neighborhood. Dr. Lawrence Mass was the medical director at the time. Dr. Mass was one of the founders of GMHC and was one of the very first people in the United States to begin translating difficult medical issues about HIV and AIDS into language that was easily understood by nonmedically trained gay men. It was Dr. Mass who first brought to my attention that some of the patients we were treating at the methadone program were having abnormal blood chemistries and were beginning to suffer from unusual illnesses, not often seen, even among poor, malnourished drug addicted individuals in the US.

Soon Dr. Mass began sharing his observations with the staff at this clinic, that he and other medical professionals were beginning to observe apparent connections between what was occurring in the gay men's community and what was happening to increasing numbers of people who had a history of sharing IV drug using paraphernalia.

Some articles began appearing in the professional literature as early as 1984 about the connection between AIDS and IV drug use. In 1988 Dr. Larry Siegel published the first book dedicated solely to AIDS and substance abuse. His book was a collection of important and ground breaking research findings. In late 1989 I began to commission a series of articles by professionals who were working with chemically dependent people with HIV. I asked the authors to clearly describe the work they were doing and include case examples. My goal in conceiving this collection was to offer professionals clear examples of how colleagues were wrestling with tactical treatment issues inherent in serving various populations of chemical dependent people with HIV. In 1991 Counseling Chemically Dependent People With HIV Illness was published and became the first book ever to solely address a variety of treatment modalities for this specific population.

In the United States, the disparity in AIDS care, who is dying from the disease and how quickly they are dying is a mirror of the class, race and economic inequities that are only growing more profound in this country. The poor, the uninsured, and women and children of color are dying sooner than middle class people with access to sophisticated treatments. From the onset social workers, psychologists, and psychiatrists have been on the vanguard of developing and providing services for all people with HIV and AIDS, and advocating for the underserved client populations ravaged by AIDS worldwide.

In the United States, the largest AIDS service organizations (ASOs) were founded by and for middle class gay (predominantly white) clients who were not being adequately served by existing health and social service organizations. They are now the "AIDS establishment" and unfortunately often are in competition with smaller community-based organizations that specifically serve communities of color for shrinking funds. By the late 1980s, several years into the epidemic, the large ASOs like AIDS Project Los Angeles and Gay Men's Health Crisis in New York began to develop services for the newer faces of AIDS: women, people of color and injection drug users, while continuing to serve their original constituency.

Multicultural Services

The community-based AIDS service organizations were initially not prepared for all of the cultural differences that arose from having to additionally serve non-gay and non-white clients. Almost all of the AIDS service organizations in the major cities reported conflicts and clashes between different groups of clients. While recognizing that poor, non white and injection drug users with HIV/AIDS needed services also, many gay men resented sharing the organizations they had started and funded with non-gay people. Often these middle class, white, gay men were quite racist. In addition there were middle class, non-white, gay men who, like their white fellow clients resented having to share "their organizations" with heterosexuals and intravenous drug using people with AIDS.

One reason so many gay men with AIDS resented the expansion of services by ASOs to non-gay people was rooted in the reality that prior to the development of ASOs there were few gay identified health care services available to treat them in sensitive ways. Before AIDS, the delivery of health care in the United States was almost exclusively dominated by homophobic professionals and institutions. Thus, gay men with AIDS were frightened that they would be soon be excluded from the ASOs which they had helped begin for themselves, their friends, and their community.

Contributing to the tension among clients at the ASOs was the fact that non-gay clients were often verbally and aggressively homophobic. What the evolving realities of AIDS created was an immediate need for the staffs, volunteers and clients of the existing community-based organizations to learn about cultural diversity. Trainers from communities of color were called in to do the trainings on racial and ethnic differences and how to be sensitive to the unique issues faced by these populations. Ultimately the community-based organizations realized that they needed to hire people who reflected the diversity of clients they were now serving.

Measuring AIDS: From Years to Decades

There is still no indication that either a cure or vaccine is in sight or that prevention efforts will stop new infections. There is a second wave of infections among educated, middle-class, urban gay men for whom infection rates had dramatically dropped as a result of the initial AIDS prevention efforts aimed at them in the early days of the epidemic. Infection rates for young gay men, especially among black and Latino gay adolescents, are soaring and show no indication of slowing down. New infections among injection drug using individuals are also not abating. AIDS is continuing to decimate inner city neighborhoods with three generations of some families being infected or having died from AIDS. Recent years have shown how living in the midst of this ongoing plague has a psychosocial impact on even those who are not infected, and new prevention efforts are targeting these populations.

In an effort to address the many faces of AIDS and the evolving psychosocial realities of all the populations affected by HIV, California-based psychologist and author Walt Odets and I were approached by Hatherleigh Press, a small publisher in Manhattan, to edit a collection of papers that would speak to these issues. This collaboration produced The Second Decade of AIDS: A Mental Health Practice Handbook which was published in 1995.

The Loss of a Partner

In 1994, after my partner, Lee, died from his long battle with AIDS I found myself drawn to other gay widowers, men like myself who had lost their beloved and were casting around for some way to make sense of their circumstances, some way to figure out how to think of the future as something other than eternal mourning. My family, my friends, my therapist and even Lee's family were not enough to hold me through the pain of losing my lover.

But those gay widowers who had walked the path before me were my indispensable guides and wise teachers. I developed an informal network of gay widowers who offered their stories and sympathy during that excruciating first year of being without Lee. As I fumbled through life as a middle-aged, grief-stricken gay man, the gay widowers became my touchstones as they made themselves available to me, asked me questions, and shared practical advice to help me move on in a positive way, without blocking out what the years with Lee had meant to me.

At that time, after a decade of unspeakable and overwhelming losses in the gay community, I assumed there would be a whole literature about the experience of being a gay widower, ranging from etiquette to self-help. But the only writings I found that spoke from the perspective of being a gay widower were sections in memoirs like Mark Doty's Heaven's Coast, some of Paul Monette's superb essays in Last Watch of the Night, and his powerfully raging poems Love Alone: Eighteen Elegies for Rog. It was Monette who, most outstandingly once again, proved himself to be the contemporary gay bard, poignantly describing how he survived the process I was just beginning. I was deeply moved, validated and also terrified by what he described. I was also eternally grateful to him, his eloquence, vulnerability and passion. I was desperate for information on what I needed to do to promote the healing I longed for. He more than any other writer provided guidance.

At the time that I was in the early phase of my mourning, I was astounded to find there was not a single specific book by or about the process of gay men becoming widowers. Even prior to the onset of AIDS an extensive literature had evolved about grief, but until very recently, little or no recognition has been given to the grief of gay men who survive the death of a partner or friend.

Mourning and Mental Health

Recent theoretical and clinical attention to AIDS and the special problems of gay partners of persons with AIDS has resulted in interest in the needs of survivors in relationships that continue to lack social approval. Prior to AIDS there were only two professional articles that specifically addressed bereavement issues of gay individuals. With the onset of HIV disease, articles and books pertaining to gay men, grief and mourning began to appear, but most current knowledge of bereavement is derived from research on conjugal loss and, to a lesser extent, on the loss of a child or parent. The extent to which these findings generalize to gay men who have lost lovers and close friends is unknown. Thus the mental health needs and responses of gay widowers is still largely uncharted territory. Even as the numbers grow, there has not been sufficient research and literature exploring the clinical implications for gay widowers.

In my quest to try and obtain a book that would speak to me as a gay man who had lost his partner, I invited a variety of gay widowers to write about their own experiences. I urged them to write something that would have been helpful to them during their own grieving, something that they themselves would have wanted to have read and that would have been helpful to them. Thus Gay Widowers: Life After the Death of a Partner was born. This book, more than any of my others was one form of therapy to help facilitate my own healing and recovery from the most intense pain and grief I had ever known. I was, of course, aware that it was also an attempt to meet an unmet need for gay men in a similar situation. When Gay Widowers was published in 1997, it seemed to mark the end of my actively mourning for Lee, and to this day remains the only book on this subject yet published.

An Epidemic With No End in Sight

Even if a vaccine were discovered today, people living with HIV and AIDS will be populations served by the mental health professions for at least another generation. The onset of combination antiretroviral therapy has resulted in a great reduction in the death rates from AIDS, but has created a host of new issues that must be dealt with. Among these are access, adherence, managing side effects, and a resurgence of good health. All of these issues have created new challenges for AIDS service providers.

Both the gay community and communities of color are overwhelmed by the quantity of people who are sick and who have died. Entire families and friendship networks have been wiped out. Some AIDS workers and other service providers working at agencies, hospitals or in private practice have worked with literally hundreds of individuals who have died. Out of the AIDS epidemic the term "bereavement overload" was coined. The impact of working with large numbers of people who have died, and preventing these skilled clinicians from burning out has only recently begun to be addressed.

One of the best ways to prevent burnout is through appropriate training and preparation for working in the field of AIDS. Another way is by building in time for staff support groups and additional mechanisms where professionals can process all the feelings that are a natural byproduct of AIDS work, including grieving their losses. In addition, there are unique issues that arise when providers themselves are seropositive or become symptomatic and have to struggle with whether or not to continue working in the field.

Out of an attempt to address these latest issues in HIV mental health and policy, I invited a diverse group of colleagues to write about the work they were doing. Once again I asked authors to be very practical and, where appropriate, to include case studies that illustrated what they were discussing in their articles. The standard I gave them was to write something that they themselves would find useful to read for their own work as well as something that would be interesting. From this emerged the most recent book I edited, AIDS and Mental Health Practice: Clinical and Policy Issues, published in 1999. Most of the articles in this volume were originally published in a journal of which I was the founding editor, called Reading & Writings published by The National Social Work AIDS Network, a national organization of HIV/AIDS social workers that is no longer extant.

Professionally I was lucky enough to have been mentored by various individuals who taught me that one responsibility of leadership is to support and empower other, often younger professionals, who may not have yet had opportunities to share and discuss their work. One of the ways I have attempted to do this is to encourage individuals on the front lines in various aspects of AIDS care, prevention and policy to publish about the work they were doing. The authors are all experts seasoned by years in the trenches working with people with HIV and AIDS. By agreeing to take the time and expend the energy to write the chapters in these books, they generously share their expertise about cutting edge clinical and policy issues.

None of my books were ever meant to be an introduction to the basics of HIV and AIDS, either medically or psychosocially. Rather they were part of the effort to provide professionals in the field and students in training with the then most current practice information about mental health practice and HIV/AIDS. HIV and AIDS care has always been a very rapidly evolving field requiring professional creativity and flexibility. My aim in writing and editing has been to hopefully provide tools that strengthen professional skills and self confidence.

I have always striven for my books to reflect the diversity of people impacted by HIV disease. All people living with or affected by HIV/AIDS have enormous and complex mental health and social service needs due to the harsh realities of HIV disease, racism, homophobia, poverty and the ever growing mean spiritedness that is so prevalent in the repressive political climate of diminishing social services for the neediest people in our society.

Historically some mental health professionals have made critical differences in the lives of people, and many are still on the front lines of working to ameliorate social injustice, only now in the era of AIDS. The work reflected in these books is a large part of why I am proud to have been one of the legions of professional social workers, psychiatrists, psychologists and counselors surrounded by inspiring colleagues in the fight against AIDS.

Excerpts

From AIDS and Mental Health Practice: Clinical and Policy Issues While some people with AIDS have continued to work throughout most of the course of their illness, others have retired because of complications related to HIV infection. With the success of combination therapies and protease inhibitors, many people with HIV disease have regained lost abilities, and a once rare question has become common: "Should I return to work?" This prospect involves a host of practical questions, but it also raises psychological issues related to the meaning of work in a person's life, the changes in perspective that follow the adjustment to a life-threatening disease, a person's relationship to the future and the difficult process of changing one's self image that all are fertile areas for therapeutic exploration in counseling and therapy. For adults who find themselves unable to work due to the effects of HIV infection and for those who now have the opportunity to return to work, there are psychological and practical, as well as financial consequences, that blend with and reinforce each other. HIV-related disability has often meant putting a career on hold at a time when peers are advancing in their occupations. This can raise feelings of loss, anger, sadness, emptiness and disorientation. But the idea of returning to work can also be emotionally traumatic. People with HIV disease re-entering the job market may face a sense of failure and regret, a fear of having lagged too far behind to catch up, grief at the loss of dreams and opportunities, anger at themselves for not trying harder to overcome disability, and psychological paralysis. These feelings may be fed by the practical challenges of dealing with resumes that are no longer so impressive and with professional skills that are no longer up-to-date. In addition, individuals reentering the job market at the same level they had been at when they stopped working, may now be competing for jobs with people who are younger than they are. Mental health providers can help clients who are considering returning to work by seeking to help them understand the practical and emotional tasks they face. For clients who want to return to work, the psychological task is to move in a direction where they will be able to redefine themselves as workers, and acknowledging but disengaging from the image of themselves as being disabled. Intensively exploring the meaning of work with clients can help them locate internal emotional strengths and resources that they bring to this effort that can be of assistance in keeping them on track in this often difficult period of change. -- By Michael Bettinger in the chapter "Intrapsychic and Systemic Issues Concerning Returning to Work for People Living With HIV/AIDS" From Counseling Chemically Dependent People With HIV Illness While workers should stress the strategy of not sharing clean injection equipment, they must also be realists and teach injectors how to clean equipment with bleach in cases when there is a necessity to share works and the origin of the equipment is not clear, like works sold on the street. Workers who do not know how to clean needles should learn to do so.... Syringe exchange is one intervention leading to safer drug use, but it is not the only one. Aside from using clean equipment, there is a need to teach drug users safer injection techniques so they will not suffer from abscesses, paralysis, and loss of limbs when they inject improperly. Nurses, phlebotomists, physician's assistants, and physicians can teach such techniques.... In most countries where harm reduction is practiced, the Needle Exchange Program is the "hook" which attracts drug users into contact with health agencies. While the provision of clean injection equipment is in itself a primary HIV prevention intervention, it is also a relevant service to clients. When operationalized in a user-friendly and nonjudgmental format, needle exchange programs will attract needle using clients and bring them into contact with providers.... The quality of the lives of drug users can be improved and enhanced on many levels while they still use drugs. Drugs users do not have to be homeless, hungry, and unhealthy. They don't have to become infected with HIV.... The most effective way of getting people to minimize the harmful effects of their drug use is to provide user-friendly services which attract them into contact and empower them to change their behavior toward a suitable intermediate objective. This means services which are accessible, confidential, informal, and relevant (client-led).... The Harm Reduction Model, which was developed in Mersey, England during the mid 1980s as a response to HIV/AIDS and the growing harmful consequences caused by the use of prohibited drugs, posits fundamental principles. HIV/AIDS prevention takes priority over prevention of drug use because it presents a greater threat to the drug user, to the public health, and to the national economy. Abstinence from drugs should not be the only objective of services to drug users because it excludes a large proportion of the people who are committed to a lifestyle of long term drug use. This is particularly important when considering the minority underclass drug users who cling to drug use as a defense against the intolerable pain engendered by their life situations and our inability as workers to provide for their survival needs, such as housing, education, employment, nutrition, medical care, and freedom from violence and abuse. Forcing people off drugs, even during long incarcerations, does not change the situation, as most drug users revert to drug use after long periods of forced abstinence.... -- By Edith Springer in the chapter "Effective AIDS Prevention With Active Drug Users" From The Second Decade of AIDS: A Mental Health Practice Handbook U.S. Latino populations are not homogeneous; they are comprised of communities of different languages, races, religions, and traditions. Individuals within these groups exhibit varying levels of acculturation. Most U.S. Latino communities are sexually conservative; direct sexual talk in public or private is still basically unacceptable. Sex education within U.S. Latino groups has traditionally been inadequate; this is gradually changing as the Latino community mobilizes against AIDS. Traditional sexual roles often polarized extremely feminine vs. extremely masculine. Women are often the "quiet pillars" of the Latino community. Childbearing is often their primary source of social status. Bisexual encounters provide a gateway for HIV into the Latino community. Because of homophobia, many homosexuals are culturally forced to be publicly heterosexual, often attributing same-sex encounters to the use of alcohol or drugs. Same-sex behaviors described by the author include closeted, self-identified homosexuality activity; latent homosexuality; and "super-macho" behaviors exhibited by heterosexuals. Ideally, partners should be educated at the same time to minimize the risk of miscommunication and misunderstanding between them. -- By Ernesto de la Vega in the chapter "Considerations for Presenting HIV/AIDS Information to U.S. Latino Populations" Within the African-American community, while there is often general acceptance of gay individuals, there is generally little tolerance for discussion of homosexuality and little opportunity for open acknowledgement of an individual's sexual orientation. African Americans generally maintain close familial bonds and kinship networks for interpersonal and financial support. Therefore, rejection by family because of homophobia may more profoundly isolate the African-American gay man than gay men who are not African-American. Most African-American gay men conceal their sexual orientation within their community, which often precipitates internal struggles with self-devaluation and alienation and generates anxiety about possible closure and rejection. African-American gay men who attempt to educate themselves about HIV infection and its prevention frequently encounter educational and economic barriers to finding such information. African-American clinicians should be aware of their own avoidance of topics related to homosexuality; a clinician's silence or failure to include questions about sexual orientation may serve as unspoken warning to the patient not to discuss issues related to sexual orientation. It is not uncommon for African-American gay men consulting with a mental health professional to appear calm, collected, and generally in control. It is important to exercise care in the initial evaluation to avoid underestimating the client's distress. -- By Shani A. Dowd in the chapter "Therapeutic Challenges in Counseling African-American Gay Men With HIV/AIDS" From Gay Widowers: Life After the Death of a Partner I was asked one night, "Does it feel like a year since Paul died?" Yes, it feel like a year. It feel like a lifetime, a year that has been a journey of soul searching and soul making, of loneliness and terror, of joy and erotic rampage. Being in a loving relationship with a reflecting companion gives one a window into his own soul. My pane has been shattered. Dutifully I've swept up the shards and put them in the recycling bin. But a great wind has scattered the slivers about, ten thousand invisible land mines from a war now long lost, lying in wait. I lost my point of reference, the reliable reassurance of unconditional love and adoration. Our pas de deux -- that anchor of our counterbalance -- has ended. After fourteen years in two successive relationships, I found myself having to learn again how to monkey through the jungle gym of the singles' playground. The rules have been changed in the midst of this plague -- too many corpses and fears -- and I have changed, too, having been struck by the arrows of love. When I was last single it was a happier time for gay people... "You must tell people about us, Winnie," Paul implored me several times in his last year. He said our people needed to hear about the magic we have. Gay people need to hear about our love stories. Love stories of disabled people, battered by life's woeful countenance. We are a strong people, a people who rise up, without warning, enraptured with romance and dreams made real. Tell them about love during the plague, he said. Tell them how we made love between the bombs. Tell about our struggles and how we overcame them, about the myth we enact. Still, I am conflicted as I begin this epistle: Do I follow Paul's wishes or observe my preferred devotional silence? Inside I feel like an Indian who thinks it no good to speak of the dead. Outside, that dominant culture keeps pushing at me, pulling, Tell us of the immortal beloved.... How much of what I am writing to you is me as the grieving widow, how much as the recovering self? How much do I hear Paul? What fragments me, of Paul-and-me, survive? I don't know. I am told that writing this could be a therapeutic process, "cathartic." But I fear when one discusses spiritually empowered events their magical properties can diminish. -- By Winston Wilde in the chapter "No Return"

For more articles and excerpts by Michael Shernoff, click here.

Michael Shernoff, MSW is an author and psychotherapist in private practice in Manhattan. He is on the faculty of Columbia University Graduate School of Social Work, and is the online mental health expert for TheBody.com, the world's largest HIV/AIDS web site, and can be reached through his Web site www.gaypsychotherapy.com.