AIDS: A Psychological Roller-Coaster at a Crossroad

The recent XVII International AIDS Conference in Mexico City covered many interesting topics, including up-to-date medical treatments and the impressive increases in programs to address the AIDS calamity in Africa. Conspicuously absent was any discussion about the psychological vicissitudes experienced by AIDS victims, and their loved ones, in the developed world. In the last twenty-five years, Americans have struggled with the disease both medically and psychologically as AIDS patients have transited from shame through acceptance and on to self-respect. Currently, we stand at a crossroads which will determine if the psychological road ahead will be healthy.

The Early Shame: During the early years of the AIDS pandemic in America, the victims had to endure the humiliation of their illness called "the gay plague." Even the scientific community initially used the degrading nomenclature of "GRID" for gay related immunodeficiency disease. Well-known figures like Reverend Jerry Falwell said we "needed to return to moral sanity" and not to "favor homosexuals" in medical research. President Ronald Reagan refused to mention the disease for the first six years of his eight-year presidency. The late Senator Jesse Helms passed what is known as "the Helms Amendment" -- a law that imposes a travel-ban on people with HIV whether they are tourists or proposed immigrants from coming into the United States. This combined battering was successful in establishing a feeling in many parts of America that "homos got what they deserved" even though there were adequate statistics (and logic) to prove that the virus had no sexual preference. Prior to 1987 it was almost impossible for an AIDS patient not to experience shame.

Acceptance: The Third International AIDS Conference held in June, 1987 in Washington, DC was a psychological turning point for AIDS patients and their families. Over 6,000 policymakers, medical researchers and professionals from fifty countries heard then Vice-President George Bush deliver a non-judgmental opening speech. Keynote speaker and United States Surgeon General C. Everett Koop’s remarks finally emphasized education and acceptance.

Because AIDS had decimated the art world including Hollywood, numerous celebrities began speaking out. Elizabeth Taylor, for example, was clear about her support for friends struggling with AIDS. At the AIDS Conference in Washington, DC, she displayed genuine emotion as she presented Surgeon General Koop with an award for his efforts to promote acceptance of AIDS patients.

By 1989 well-organized protests were erupting. In March, several thousand angry demonstrators organized by Act-Up picketed New York's City Hall in protest of Mayor Koch's lack of progress in providing assistance to AIDS patients. Shortly thereafter, Act-Up continued their effective protests at strategic locations, including the New York Stock Exchange and AZT manufacturer Burroughs Wellcome corporate headquarters. This particular demonstration resulted in the pharmaceutical giant’s reduction of AZT’s price by twenty percent. Other protests took place in Montreal, Canada and at San Francisco's Golden Gate Bridge to commemorate "a day without art" due to the huge numbers of stricken artists. The result was that the average American saw an angry yet human face on HIV/AIDS as major news networks covered marchers waving banners saying "silence = death."

AIDS patients watched in awe as HIV positive Mary Fisher spoke at the Republican National Convention in 1992. It seemed unimaginable that the daughter of billionaire, philanthropist Max Fisher and advisor to several presidents would become a vocal and open Republican AIDS activist. Her emotional speech emphasized tolerance and rebuked some members of her party who claimed that HIV/AIDS was a "self-inflicted plague" caused by immoral behavior. A clear feeling of AIDS acceptance had been established.

Self-respect: By 1995, anger and acceptance began to turn into self-respect in the gay community. Gone were the days when actor Rock Hudson hid his illness until the very end. AIDS was no longer thought of as a "gay curse," and the illness was rapidly spreading to the heterosexual community, mainly poor inner-city neighborhoods. Numerous well-known gay celebrities' disclosure of their positive HIV status fueled a sense of pride. Four-time Olympic gold medalist, Greg Louganis, considered to be the greatest competitive diver of all time, admitted that he had been "diagnosed" (with HIV) prior to the 1988 Olympic Games in Seoul, Korea.

Concurrently, HIV researchers and infectious disease physicians who had previously been observed with considerable contempt were becoming highly respected. The transition was complete when AIDS scientist and protease inhibitor pioneer, David Ho, was named Time Magazine's 1996 "Man of the Year", which added to a new sense of prideful identity in the HIV world.

The Crossroads: Toward the end of last century, the majority of Americans knew, or knew of, someone who had been stricken with AIDS, and they increasingly exhibited compassion in much the same way as they understood the tragedy of cancer. Fear and hatred began to turn into empathy and a thirst for information gradually replaced discrimination.

Even so, curious and alarming trends began to emerge in the AIDS community. One condition is known as "the Lazarus Syndrome," named after the biblical figure who returned from the dead. The term, first coined in 1996, referred to relatively young, ill patients who are living longer than they had anticipated. One of the resulting problems is inadequate resources given that they had planned for a shortened life followed by a premature death. Many found themselves financially and emotionally challenged by aborted careers. Newly formed AIDS assistance programs scrambled to address both the financial and psychological repercussions of the changing times. The New York Times Sunday Magazine offered the first insights to the phenomenon on November 10, 1996 in an article titled "When AIDS Ends," by Andrew Sullivan. It addressed the unprecedented experience in modern times of the end of a plague, during which victims would have contemplated their deaths and adjusted their lives accordingly only to reassess and handle their possible survival. Sixty years ago the father of Existentialism, Albert Camus, described a population's mindset as it faces death in his book, La Peste (The Plague). Sullivan studied the psychological problems encountered when that condition is at least partially reversed.

In his book, Dry Bones Breathe, the late Eric Rofes analyses a similar condition in a chapter titled "The Protease Moment takes Hold." He points out how, starting in the late 1990s, national marketing campaigns for new HIV medications showed very healthy, smiling faces atop buffed bodies boasting which medicine they were using. Many AIDS patients were facing a life "beyond AIDS" -- a life that no longer would be solely defined by having AIDS. Rofes talks about a "new language" to deal with this condition to which we must add new behaviors. The challenge now is how to ascertain that these new behaviors are as healthy as possible.

Almost every American city has at least one non-profit AIDS assistance program which deals with the vast majority of local AIDS patients. Nowhere is the need to shape this new behavior more important than in these organizations. The programs are more-or-less well funded by a combination of federal and state grants supplemented by private donations from concerned local citizens. Their efforts allow the "clients" (a term which emphasizes self-esteem) to fight housing discrimination, attend support groups and be seen by local health professionals of many disciplines. Most programs also offer some free meals, financial subsidies and, importantly, assistance in obtaining the clients' monthly supply of very expensive medicines.

Some agencies encourage clients to become self-sufficient and, when energy levels allow, go back to work. This presents a serious dilemma, however. As clients re-enter the work-force, parts or all of the complex mix of local and federal assistance evaporate. When earned income rises the individual may become largely independent but not prosperous enough to afford the vitally important, hugely expensive medications.

Yet without becoming financially independent, a sense of entitlement is likely to develop. The resulting effect is often diminished self-esteem and restricted mental freedom. Equally dangerous is hiding behind a "disability" and avoiding responsibilities. Even the most mentally and physically healthy people have to force themselves to persevere in times of setbacks. The most self-assured of us will, on occasion, doubt their convictions but then force themselves to move forward. These people end up growing and become stronger -- demonstrating a trait called "resilience". However, if one is allowed, indeed sometimes encouraged, to "give into" a bad day or piece of problematic news, one runs the risk of killing the survival instinct.

The challenge for AIDS assistance programs is to address these paradoxes on a person-by-person level. Those who can be encouraged to push themselves may well transit from "AIDS victims" to "taking responsibility" for an ailment. It is critical for mental health counselors to not only explore their clients' fears and psychological goblins but also to emphasize the individual's potential in order to promote resilience.

Today's youth has largely forgotten the devastation of AIDS because they do not face it with nearly the same frequency as did the generation that preceded them. Gay Americans in their twenties and thirties have not lost huge numbers of friends and do not make regular visits to hospitals followed by attending memorial services as the previous generation did. This fortunate condition presents challenges, however. Many youths believe that AIDS is a "manageable disease," and, consequently, safe sex is no longer an absolute priority. The result is a renewed incidence of HIV transmission in teens as well as seniors. This tragic condition may exist because fewer churches, schools and television commercials address the risks of HIV transmission, and many community organizations no longer encourage open discussions on safe sex.

In a way, we have come full circle. The new American challenge is to enjoy the progress we have made while not losing our focus on how to remain both medically and psychologically healthy. AIDS assistance programs need to sort out their clients various abilities and to encourage them to offer those talents to the community -- and to be remunerated for them. Community programs, in turn, urgently need to re-prioritize the importance of educating their constituents in HIV prevention. If for no other reason, we owe that to the estimated five hundred thousand Americans who died horrible deaths caused by AIDS during the period when many so-called leaders humiliated them.

©2008 Richard René Silvin

Author Bio
Born in New York, from the ages of seven through eighteen, Silvin grew to adulthood within the confines of strict and homophobic Swiss boarding schools. After earning his bachelor's degree from Georgetown University (1970) and an MBA from Cornell (1972), where he also later lectured and was voted one of the most successful graduates. He spent twenty-five years as a senior executive in a New York Stock Exchange hospital company. There Silvin rose to the head of the international division of American Medical International, Inc., which owned and operated one hundred hospitals in ten countries. René lives with his beloved canine companion, T-Cell, in Atlanta, Georgia, and Palm Beach, Florida. His awards include being a Chevalier (Knight) of the Franco-Britanic Order. He has written numerous articles on hospital management and is listed in Who's Who in the World (1988), Who's Who in France and Industry, and Who's Who in Health Care. His book, Walking the Rainbow, is available now from Whitmore Publishing Co.