In dedication to my husband,
Jean Rock Claude St. Jacques
...... Mon doux homme. Tu n’es rien de moins que tout......
Preface
One of the most complex and complicated health problems confronting the world today, is the Human Immuno Deficiency (HIV) infection and the Acquired Immune Deficiency Syndrome (AIDS) disease. The National Commission on AIDS in 1991, classified AIDS as the deadliest sexually transmitted disease ever to confront humanity. HIV is the virus that causes AIDS. The virus was first discovered by Luc Montagnier at Pasteur Institute in Paris and Robert Gallo at the National Institute of Health in the United States. Since the virus was first discovered in the United States, it has spread to all parts of the Globe like wildfire. Since the start of the epidemic, an estimated 77.3 million people have become infected with HIV and 35.4 million people have died of AIDS-related illnesses, but there is hope!
Introduction
In my first book, Neuropsychiatric Comorbidities with HIV and Antiretroviral Therapy, I gave an overview of HIV, the comorbidities that couple with the disease itself, and antiretroviral therapy (ART) for HIV positive persons, whether newly diagnosed or those that are 2nd & 3rd and even 4th generation, long-term survivors. While the phrase “long-term survivor” is often used to refer to people who have lived with HIV for 10 years or more; those who have been living with HIV since the beginning of the epidemic in the 1980s consider a long-term survivor to be someone diagnosed before the release of the lifesaving “cocktail” of drugs that have turned HIV into a manageable illness instead of a sure-fire death sentence. The HIV cocktail created a Lazarus effect for many people living with HIV, returning them to a relatively healthy life.
This is, of course, a terrific thing. Newfound life and hope rescued from the former reality of a certain death looming somewhere in the unpredictable future. However, unforeseen longevity has wrought its own set of complications, including survivor guilt, serious side effects from long-term HIV infection and the toxicity of early powerful drugs, loneliness, despair, and the isolation that comes from seeing most of your peer group die before you. Too many long-term survivors get caught in a financial trap, having been forced to go on long-term disability or public assistance benefits when they were too ill to work, and now finding themselves with large gaps in work experience, lacking current job skills, and without savings as they near retirement age. And of course, stigma and discrimination against people living with HIV persists, even within our own communities.
As difficult as it is to grasp, even now in 2020, in 1985, the vast majority of Americans (80%) said it was "probably true" that most people with AIDS were homosexual men. More than a quarter of Americans (28%) reported that they or someone they knew had avoided places where homosexuals might be present as a precaution to avoid contracting AIDS, and this number grew to 44% by 1986.
As the spread of AIDS continued, Gallup found some Americans expressing judgmental views about those who had contracted the disease. In two separate polls in 1987, roughly half of Americans agreed that it was people's own fault if they got AIDS (51%) and that most people with AIDS had only themselves to blame (46%). Between 43% and 44% of Americans in 1987 and 1988 believed that AIDS might be God's punishment for immoral sexual behavior. Still, a solid majority (78%) agreed that people with AIDS should be treated with compassion. But most Americans (60%) also agreed that people with AIDS should be made to carry a card noting they had the virus, and one in three (33%) agreed that employers should be allowed to fire employees who had AIDS. Twenty-one percent of Americans said people with AIDS should be isolated from the rest of society. Incredible, and reprehensible!
HIV and AIDS are still problems in the U.S., though not to the degree they were during their peak in the 1980s and '90s. The diminished percentages of Americans naming AIDS as the country's greatest health problem reflect the advancements of treatments, which mean that infection with HIV is no longer a death sentence for people. So, I state again, slowly but surely, we are making some progress.
Long-term survivors, such as I, 34 years HIV+ in July, are the forgotten collateral damage of the HIV response, but we, as a community, must do more to support PLWH, families, friends and partners to address their unique needs. Many of us, were on the front lines fighting for our lives from the earliest days of the epidemic, when death engulfed our communities. We have survived as generations have shifted and the reality of HIV and AIDS has transformed around us. We owe it to them to treat our experience with the attention and dignity it deserves, and to ensure we all have the support and resources they need to thrive.
Within the following chapters in this book, my goal is to give persons afflicted with the disease and also for those who are either, a partner, family member, friend or loved one, inspiration and hope in dealing with this global pandemic. There is life after HIV!
The search for finding one’s self and learning to understand the meaning of our lives, can be on ongoing effort and for some, it may take their entire life. Some may find new spirituality, others may bring God into their lives, a few may study different religions for a broader knowledge on faith, hell, some may meditate or practice yoga. Whatever path they chose is dramatically different for every individual. I believe one great strength is to remember that HIV does not stop you from being the person you are; you’re still the same person you were before you became positive. Those person’s afflicted with the HIV virus constitute a subgroup that view life differently than others who are not positive. One of the great problems associated with HIV/AIDS in the society, is stigmatization.
Chapter 1
HIV Stigma
A diagnosis of HIV infection carries both physical and social ramifications. Physically, testing HIV-positive means that one has contracted a life-threatening disease. PLWH typically suffer detriments to their immune systems which increase their vulnerability to opportunistic diseases (e.g., bacterial and viral infections, neurological diseases, and cancers) that may ultimately result in death. Socially, HIV infection also means that one has gained a mark of stigma, that can lead to devaluation in a variety of contents. Stigmatization is a major issue that societies and support organizations have to contend with in dealing with the problems of HIV/AIDS. Therefore, HIV infection not only means that one has to living with and managing a chronic health condition; it also means that one will most likely face social stigma that may fundamentally change the way one perceives oneself and interacts with others.
Stigma can affect the care and acceptance of people who are HIV positive in their society. After a person has tested positive with HIV, they face the decisions that include how to enter and adhere to care, and whether to disclose their HIV seropositivity to their partners, friends, family, loved ones, colleagues, employers and even health care providers, as well as on the self-worth, sense of belonging (e.g., in community or faith based settings) and overall general quality of life.
Conversely, stigma can also trigger positive forces for change and networks of solidarity that rise to challenge the social norms and practices that marginalize, stigmatize and discriminate. Stigma is a powerful and discrediting social label that radically and negatively affects the ways individuals view themselves and the ways others view the individual as a person. HIV-related stigma and discrimination refers to prejudice, negative attitudes and abuse directed at people living with HIV and AIDS.
Stigma can also have a persuasive presence in the everyday lives of many people living with HIV, as well as many people who care for, are married to or are friends with PLWH. Stigma can also affect people linked with HIV in other ways through their sexual practices, such as) same-sex attraction), or professions, such as (sex work), or behaviors, such as (injection drug users) that are associated with HIV transmission.
In
