What is AIDS?
Why do I need to
know about AIDS?
someone get infected with HIV?
you sure you can't be infected any other way?
How do you
prevent infection with HIV?
How can I find
out if I am infected?
What can I do if
I am HIV-positive?
I Can't Cope with
my Fear of AIDS
I Act Around People with AIDS?
What is AIDS?
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 (Haplogroup L, 50% in South India, 15%
elsewhere and in Pakistan). 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
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
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
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.
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.
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.
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
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
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
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.
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
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
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.
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.
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.
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.
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.
that anyone can have AIDS
Be aware of special health
There are many things we take for granted in our daily lives, such
as the ability of our immune system to fight off ever-present germs,
or being able to move comfortably in many environments. But for
someone with an immune weakness, the environment presents many
challenges and hazards. People with AIDS have special health needs
that force them to worry daily about things most of us never even
think about. There are a number of things we can do to make
life easier-and more healthy-for people with AIDS, both in our homes
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
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.
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.
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.
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.
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
Books about the experience of
Videotapes about the
experience of AIDS