What is AIDS?

Acquired Immunodeficiency Syndrome (AIDS) is a condition that gradually destroys the body's immune defense system and makes the body vulnerable to opportunistic diseases. It is caused by infection with the Human Immunodeficiency Virus (HIV). After HIV invades the body, it lives and multiplies in the white blood cells, which are the cells that protect the body from disease. As the virus multiplies, it damages or kills these and other cells, and the body becomes prey to a wide range of disease-causing microbes. When HIV has destroyed enough white blood cells, the body is no longer able to fight off many infections, and a person begins to get sick. If a person with HIV infection has not had many white cells die, that person feels fine and looks fine. That person is asymptomatic (that is, has no symptoms of AIDS), but can still give the virus to someone else. People who are infected with HIV can be asymptomatic, looking and  feeling well for ten years or even longer. That is why the practice of safer sex is vitally important, even with people who seem to be well. As more and more white cells die, the HIV-infected person begins to get sick and is then said to be symptomatic. When there are very few white cells left, particularly of the kind called CD4+, and one or more serious diseases start occurring, the HIV-infected person has AIDS.

Why do I need to know about AIDS?

As of today, millions of Indians have been diagnosed with AIDS; millions have died. In less than 15 years, AIDS has become the principal killer of all Indians between the ages of 15 and 49. It has also been found recently that Indians do not have genetic protection against the AIDS virus compared to other groups, especially the southern population. This means that they get infected more easily compared to other groups. Since the epidemic began, an estimated 20 million people worldwide have been infected with HIV, the virus that causes AIDS.

People infected with HIV are our friends and neighbors; they are people in our offices and schools, temples, churches and mosques. They are our children, our parents, our brothers and sisters. They live in every state and community in our nation. Everyone needs to know about AIDS because it waits at everyone's door. Each of us must learn how to prevent infection with HIV, how to support the people around us who are HIV-infected, and how to make sure that our national, state, and local governments deal sensibly with this insidious disease. Hiding behind the veils of cultural superiority or karma is not an option; AIDS is a sexually transmitted disease and has to be tackled accordingly.

How does someone get infected with HIV?

For someone to get infected with HIV, the virus must get past the skin into the body. A person can let that happen in one of three ways: 

• by having sex without a condom with someone who is infected;

• by injecting drugs with needles you are sharing with someone who is infected;

• by having a blood transfusion with blood from an infected donor. However, blood donated for trans-fusions in is now tested for HIV, so people are almost never infected through blood transfusions. 

There is a fourth way in which the virus can pass from one person to another: It can pass from an infected woman to her baby in the womb, during birth, or during breast feeding. 

Are you sure you can't be infected any other way?

Millions of people in the world have been infected with HIV, so by now we would know if there were any ways to get the infection other than through unprotected sex, shared needles, blood transfusions, or mother-to-child transmission during pregnancy, birth, or while breast feeding. Globally, most HIV infections have resulted from unprotected sex. In the United States, the shared use of contaminated needles for injecting drugs is responsible for a growing proportion of new infections. No one has ever been infected by a shared coffee cup, spoon, or fork, or by the use of a water fountain or a toilet seat. No one has ever been infected by a mosquito or another insect. No one has ever been infected by hugging people with AIDS or by eating dinner with them or by dancing with them or by keeping them company and listening when they need to talk to someone. 

How do you prevent infection with HIV?

HIV in sufficient amounts to cause infection exists in blood, semen, vaginal fluid, and breast milk. You can prevent infection with HIV by making sure that these fluids from an HIV-infected man or woman don't have a chance to enter your body. The best ways to be sure are to practice safer sex by using condoms and to refuse to share drug-injection equipment with anyone. 

Use a latex condom every time you have sex. 

If you have vaginal or anal sex, use a latex condom. Use a condom or a dental dam (a square of latex) if you have oral sex. A condom will keep the virus, which can be found in semen or vaginal fluids, from getting into your body. Always use a latex condom; lambskin condoms don't protect you from HIV. Always use a water-based lubricant, such as K-Y Jelly or Foreplay. Oil-based lubricants, like vegetable oil, hand lotion, or petroleum jelly (Vaseline), can make the condom break. For additional protection, choose a lubricant that contains the spermicide nonoxynol-9, which seems to kill HIV. But always use a condom with nonoxynol-9 foam or lubricant: the chemical alone is not enough to protect you. Also, remember that many kinds of sex won't put you at risk for HIV infection. Try massage, masturbation (with a partner or alone), foreplay, phone sex, or necking. 

Clean your injection equipment and never share it.

If you use a needle to inject anything: drugs, or insulin; don't share it with anyone. To kill the HIV in your syringe (rig or works) and needle, you must clean them with undiluted (that is, full strength) household bleach. Pull the bleach up into the needle and syringe; soak the filled equipment in the bleach for 30 seconds; then squirt the bleach into a sink. Do this twice. Then pull clean water into the needle and syringe, and squirt the water into the sink. Do this at least twice. Remember that cookers and cotton can also have HIV in them, so don't share them with anyone. Not sharing is much easier than cleaning in this case.

How can I find out if I am infected?

When HIV infects you, your body tries to fight the infection in the same way it fights all viruses and bacteria: It produces antibodies against the virus. You can find out if you have been infected with HIV by getting a blood test for the HIV antibody. If you have the HIV antibody in your blood, you are HIV-positive. Being HIV-positive does not mean that you have AIDS, but it does mean that you have become infected with HIV and that you can pass the infection to someone else. If you are thinking about having a child, you should ask to be tested before you become pregnant, especially since passing the virus from mother to child can now be prevented. If the test does not find the HIV antibody in your blood, you are HIV-negative.

However, if you have had unprotected sex or have shared needles with someone not long ago, you may have become infected too recently for the antibody to be detected. To make sure that you aren't infected, it's a good idea to have yourself tested again in six months. Be sure to practice safer sex and to use only clean needles in the time between tests. If you are pregnant, enroll in a prenatal care pro-gram and be tested again. If you test negative again, then the challenge for you is to stay negative for the rest of your life. If you are tested in a health clinic, hospital, or doctor's office, the result will be kept confidential. That is, it will be entered in your medical record, but people outside the health-care setting will not be able to get the information without your permission. Be aware, however, that your health insurance company will probably be able to get information about your HIV test from your medical record. If a company learns that you're HIV-positive, it may be very difficult for you to get new life, health, or disability insurance. For that reason, many people choose anonymous-testing sites for HIV-antibody tests. Anonymous testing means that you can be tested without having to give your name or address. Instead, you are given a code number that you must use when you return for your test result. Since no one can trace anonymous results back to you, you have greater protection from discrimination. Before and after testing, you will receive counseling and will have a chance to ask questions.

What can I do if I am HIV-positive?

There are treatments for HIV infection that can help keep you healthy and may prevent other infections. The availability of treatments is one of the best reasons why you should decide to be tested. So if you are HIV-positive, see your doctor or go to a health clinic, even if you don't have any symptoms of illness. Ask the doctor to perform tests to evaluate the strength of your immune system. Ask if treatment is advised. Also, if you are HIV-positive, you may find it helpful to talk with others who are HIV-positive. They can help you deal with issues like who to tell, when, and how. Often they can help you find the best doctor to talk with about your personal situation. There are many useful publications available from your local AIDS service organizations. People in these organizations can help you to learn more about living with HIV and to arrive at decisions that make sense for you. 

     The information above was provided by The American Foundation For AIDS Research (AmFAR).

I Can't Cope with my Fear of AIDS

Many of us are physically well yet troubled that we might have AIDS, been infected with the AIDS virus, or be passing the virus to our sexual partners, spouses or unborn children

. "The Worried Well"

Physically well people living with the fear of AIDS and the fear of getting it have been  referred to as the "worried well", but with newspapers carrying daily stories about AIDS, nearly everyone is frightened and concerned however well they feel. This fear is often reasonable -- an emotional call to do something concrete to reduce the actual danger of contracting AIDS. But there are those of us among the "worried well" who think so much about AIDS that worry itself becomes a central part of our lives. Some of us may not even be aware of worrying, but our behavior shows the effects of fear, anxiety, or depression; we lead lives that are sad, joyless, and unsatisfying. 

  How Should I Act Around People with AIDS

We get nervous. We avoid the subject. We look away. We don't want to know. We may not like to admit this to ourselves, but we don't really like to talk about AIDS, and worse still, we don't know how to act around people with AIDS. We'd rather avoid them. AIDS forces us to confront parts of life we are uncomfortable with, like sexuality, sickness, and death. People with AIDS know all of this. They know that their friends avoid certain subjects with them. They notice that people stop touching them. They hear us talk about "innocent victims of AIDS" and wonder if they are among the guilty. They feel themselves gradually being pushed outside, not called, left alone, cast off by society.  It's normal to have some fear or troubling thoughts and uncertainties about what to do or say. You shouldn't be ashamed. Everyone is unsure of how to act in new situations. If you haven't known anyone with a fatal disease before, you're probably not going to know what to do when you first meet someone who does.

While we should be aware of some basic health issues and special sensitivities people with AIDS might have, there is no need to learn any special new kind of behavior to use with them. We only need to treat them with the same respect and humanity with which, ideally, we treat everyone. There are, however, a few wrong assumptions many of us make about what to say or do around people with AIDS that can lead to thoughtless and mistaken characterizations and prejudgment. What then, is the best way to reach out to people living with AIDS? The following suggestions should help. 

Get to know people living with AIDS

Knowing people who are living with HIV helps to humanize the disease and allows you to see beyond the staggering headlines and statistics. AIDS isn't really about numbers and risk groups-it's about people, about friends and family, co-workers and caregivers. Most of us are afraid or unsure of ourselves in unfamiliar situations. We also may feel  uncomfortable around, or have wrong ideas about, people we don't know. AIDS is a scary disease. People who have AIDS may seem scary as well. The obvious way to solve this problem is to get to know some people living with AIDS. 

It's important to remember the difference between being HIV positive and having AIDS. People who are HIV positive may be healthy; they often look just like everyone else. You probably already know people who are HIV positive, and you just are not aware of it. Unless people tell you their HIV status, you can't tell who has been infected. You can meet people with HIV anywhere - on the job, at a baseball game, at the grocery store - anywhere you meet people.

Those who have been diagnosed with AIDS, however, are beginning to feel - and show - the effects of a weakened immune system. As the disease progresses, they may need more assistance and support. These are probably the people you will meet if you begin volunteering for AIDS service organizations, whether you are delivering meals, providing practical support, or visiting the AIDS ward.

There are many ways to learn about AIDS and how it affects the lives of those who live with it. A good first step is to read books, watch documentaries, or even read plays by or about people with AIDS. Your local library probably has a number of the excellent books listed in the back of this chapter. Many video stores rent films like Philadelphia or Longtime Companion and documentaries such as Common Threads: Stories from the Quilt, a film about the AIDS Memorial Quilt. These works contain many inspiring and moving stories about the lives of people with AIDS, their caregivers, and families.

As the disease takes hold in more communities across the country and around the world, it becomes more and more likely that you will know someone who is affected by AIDS - a friend, a co-worker, even a family member. If AIDS has not yet touched your life so personally, you may want to become acquainted with people who are living with AIDS. Once you have an understanding of AIDS as a force in the lives of individuals and not just as a faraway and terrifying plague, you may feel ready to become involved in the fight against the disease. One of the best and most helpful ways to get to know a person with AIDS is to volunteer f or an AIDS service organization in your community. There are many ways to make a difference. For instance, you can deliver meals to people with AIDS, work at a drop-in center, or help to provide practical or emotional support to people who are living with the disease.

Don't misspeak about AIDS

Language and how we use it is very important. It reveals a lot about what we think and how we feel. When talking about AIDS, there are a number of disrespectful and dehumanizing words we may use unintentionally. 

There are no "AIDS victims"

One of the most important changes we should make is to stop using the term victim to refer to people who are living with AIDS. By calling someone an AIDS victim we are saying that he or she is powerless in the face of this disease and should have no hope. We should instead use our words to emphasize the strength and the hope of those fighting AIDS.

There are no "innocent victims"

Early in the epidemic - and even today, unfortunately - it was common for people to talk about the "innocent victims" of AIDS who caught the disease "through no fault of their own." This implied that anyone who caught the disease because of doing something unsafe was some sort of guilty perpetrator of AIDS who deserved to suffer a terrible death. This sort of judgment, which casts some as innocent and lays blame on others, serves only to increase the stigma attached to this awful disease. No one with AIDS deserves to have it. No one deserves to suffer. 

There are just people with AIDS

 What you call someone is important. A name signifies more than just the words used, it suggests how the individual being referred to is seen by the group. People are often confused about what to call a person living with AIDS. If the term victim is out, what can you say? Most say, simply, "person with AIDS," which is often shortened to "PWA." Others even make it "PLWA" or "person living with AIDS." These phrases and acronyms help to maintain the humanity of the person involved, and they avoid reducing anyone to a diagnosis or condition. 

Do not ask how a person caught HIV

It's tactless to ask how a person got AIDS. It implies that some of the ways of contracting the virus are all right and others are not. It's like asking someone if they are an innocent victim or if they deserved it. This question serves no real purpose and gets in the way of getting to know a person living with AIDS. 

Be yourself: behave normally toward people with AIDS

Now that we know AIDS can't be spread by casual contact, how do we relax enough to be casual with a person who has AIDS? Many people become very nervous about this. Worrying that they might offend or upset, they find it hard to relax and behave naturally. People with AIDS will be much more upset by distance and restraint than by anything you might say. Treat people with AIDS with respect and awareness, not with velvet gloves. 

Don't be afraid to touch 

Humans crave touch. Being touched is comforting; it's one of the ways we know that we are liked and trusted by others. Without touch, there is less reinforcement, less comfort, less love. Without touch, there is a sense of isolation, of being alone. Because so many people are afraid of touching them, people with AIDS miss out on this ordinary physical contact. Hugging and shaking hands are completely safe and can make a huge difference in the life of someone with AIDS.

Don't be afraid of saying the wrong thing

Although it is important to learn about respectful language and other sensitivities, these issues should not stop people from making contact. The main challenge is to not behave differently toward people with AIDS. When you make a genuine attempt to know someone, your friendly intention makes more of an impact than a few wrong words ever could.

Understand that anyone can have AIDS

AIDS crosses all lines of gender, religion, class, and sexuality. It is not simply a gay disease. While it is true that gay men were among the first and hardest hit, AIDS has spread far beyond this community. Gays and lesbians responded very publicly and heroically to the epidemic. While the gay and lesbian response has been inspiring, the public has been less receptive to AIDS information because it perceives AIDS as a gay disease. This attitude not only stigmatizes those living with AIDS, it leads to unnecessary risk-taking, poor choices, and the spread of fear and hatred in our society.

If you see AIDS as a disease that only touches other people's lives, you probably won't take the precautions that could save your own life. You may also think of those who are infected with HIV or living with AIDS as different or as deserving of their fate. The AIDS epidemic provides an opportunity to accept others and to practice compassion. If you know someone who has AIDS-if not a friend, perhaps a friend of a friend, a friend's family member, and so on-you may wonder if your relationship with that person will change. Remember, a person's personality doesn't change when disease strikes. They still have the same likes, dislikes, and sense of humor. Also, like anyone who is facing a terminal illness, a person with AIDS wants and deserves to be treated with respect, dignity and, most importantly, without pity. It's important to keep this in mind when relating to people with AIDS.

Pity is an emotion that may seem loving or kind to the one who feels it, but which feels very different to the person on the receiving end. It is kinder to ask "May I help you?" than to say "Do you need help with that?" No one wants to feel patronized or condescended to; no one likes feeling powerless or like a burden. 

Don't go to work sick. When you go to work sick, you not only run yourself down and increase your own recovery time, you may also give what you have to co-workers. Since people with AIDS have a tough time fighting off infections, keeping your cold and flu bugs at home helps everyone stay healthier. Provide a healthy space. A healthy environment is good for everyone and can help reduce the risk of spreading common colds, flus, and more serious infections among all people, including people with AIDS or HIV. Make sure there is adequate ventilation at home and in the workplace, and keep things clean, particularly in kitchens and bathrooms. Bacterial and fungal infections that are airborne or spread on surfaces can be very damaging to people with weakened immune systems. Make sure that air-conditioning filters are cleaned regularly and that thermostats are not set too low.

Avoid strong scents in personal care and household products. Strong scents can be overpowering to someone with a weakened immune system. Do not, for example, overdo the cologne or the air freshener. 

Don't serve risky foods. Avoid undercooked, unwashed, or potentially spoiled foods, since people with AIDS are more sensitive to harmful bacteria than healthy people are. Good foods for people with compromised immune systems are basically the same foods that are healthy for the rest of us, including lots of fruits, vegetables, and whole grains. Be sure to wash foods that may have been chemically treated. Some foods to avoid are: Unpasteurized milk, dairy products, or soft, ripened cheeses (like Camembert); raw fish, meats, and eggs (sushi, oysters, eggnogs); undercooked meats; and aged foods, such as cheeses, sausage, or moldy items. 

Have noncaffeinated beverages available. While caffeinated beverages seem to be what makes the world go 'round, they can be harmful to the health of people with AIDS. Be sure to have noncaffeinated options, such as herbal teas, available. 

Keep pet waste out of the way. Although animals can be a tremendous source of love and joy for people living with AIDS, handling their waste products can be dangerous-even deadly. Toxoplasmosis, a serious fungal infection that leads to seizures, coma, and death, is spread most commonly through cleaning out kitty litter. Psittacosis is an infectious disease-causing organism that is spread through bird feces.

Books about the experience of AIDS

Anonymity: The Secret Life of an American Family by Susan Bergman (Farrar, Straus & Giroux, 1994)

Borrowed Time: An AIDS Memoir by Paul Monette (Avon Books, 1988)

In the Absence of Angels by Elisabeth Glaser and Laura Palmer (Berkley, 1992)

Positive Women: Voices of Women Living with AIDS edited by Andrea Rudd and Darien Taylor (Second Story Press, 1992)

A Promise to Remember: The NAMES Project Book of Letters edited by Joe Brown (Avon, 1992)

The Quilt: Stories from The NAMES Project by Cindy Ruskin (Pocket Books, 1988)

A Rock and a Hard Place: One Boy's Triumphant Story by Anthony Godby Johnson (Crown, 1993)

Ryan White: My Own Story by Ryan White and Ann Marie Cunningham (Dial Books, 1991)

The Screaming Room: A Mother's Journal of her Son's Struggle with AIDS by Barbara Peabody (Avon, 1986)

Seasons of Grief and Grace: A Sister's Story of AIDS by Susan Ford Wiltshire (Vanderbilt, 1994)

Sleep with the Angels: A Mother Challenges AIDS by Mary Fisher (Moyer Bell, 1994)

Someone Was Here: Profiles in the AIDS Epidemic by George Whitmore (NAL Books, 1988)

Surviving AIDS by Michael Callen (Harper Perennial, 1990)

Thanksgiving: An AIDS Journal by Elizabeth Cox (HarperCollins, 1990)

Videotapes about the experience of AIDS

Common Threads: Stories from the Quilt

Philadelphia

Longtime Companion

The Los Altos Story