You Are Not Alone
By Jim Lewis and Michael Slocum, former editors of The Body
Positive. This article appeared in WORLD's newsletter in the
August 1997 issue.
Maybe you have tested HIV+ very recently; maybe you've known
for some time, but this is the first time you've reached out for
information or support. You need to know that you are not alone.
There are an estimated 2 million HIV+ people in the United
Testing positive for HIV does not mean that you have AIDS, but
HIV is probably the greatest threat to your life you have ever
faced. This virus may remain inactive in your body for a long
time, but it may not. If you are healthy now, you may still go
on to develop some sort of health problems related to HIV. You
may develop AIDS. There remain so many uncertainties surrounding
HIV, and though there is currently no "cure" for HIV infection,
there are treatments. You need to learn what information is
available and make informed choices about your health.
Many HIV+ people now live fulfilling and happy lives. Many are
healthy and show no symptoms of disease. Many choose to take
treatments and drugs that promise to lengthen their lives. So,
as serious as this is, there is hope. You do not have to look at
testing HIV+ as if you've been given a death sentence.
It's a good thing you found this out. As upsetting as testing
positive may have been for you, you are better off knowing, so
you can learn about HIV and decide what you want to do about it.
The fact that you cared enough about yourself to get the HIV
test and the fact that you are reading this magazine show that
you are concerned about your health. So give yourself some
credit. You have taken important first steps to take care of
yourself and you should be glad about it.
Years ago, those who tested HIV+ had few places to turn for
support. These people felt like they were hanging in limbo.
Fortunately, much has changed. We know more about HIV now and
many organizations have formed around the world to offer support
and information to people living with this virus. Many have
already faced the questions inherent in living with HIV, and
many will follow. You don't have to face this by yourself. There
are lots of hands reaching out to assist you.
Your emotional health
Finding out that you are infected is usually overwhelming. Even
if you had suspected it for some time, learning that you are can
be a very traumatic experience. Testing HIV+ has led some people
to quit their jobs, quickly write out their wills, and say
goodbye to their friends and family, only to discover that they
aren't sick and will probably live for many years to come. It's
common to perceive these results as an immediate death sentence,
but this simply is not true.
What you are feeling now is perfectly normal. Anger, fear,
confusion, numbness, depression--all are completely natural
reactions to the kind of news you've heard. If you've known for
even several weeks, you may find yourself having a normal day,
then suddenly remember that you're HIV+. It's very common for
this kind of realization to just "hit you in the face" out of
nowhere over and over again. You are not going crazy if this
happens. Your moods may swing from profound sadness one moment
to extreme anger the next. That's normal too.
The first step to getting through this emotional turmoil is to
acknowledge what you are feeling. Don't be surprised to find
yourself going through the day in a state of shock. Allow
yourself to feel nothing. Your emotions will come rushing back
in soon enough. This is merely a way that your mind "turns off"
to allow you to cope with a problem.
If you are feeling angry, that's fine. You have every right to
be angry and a lot to be angry about. This virus is threatening
your very existence. It's ok to express this anger. If you're
frightened, acknowledge your fears. You are thinking about
things that would make anyone fearful. You are allowed to feel
the way you do. Don't be hard on yourself or think that you have
to be strong. You don't have to be anything.
Fear of sickness & death
Almost everyone is afraid of getting sick and dying. If you're
young, you may never have had to face the death of someone close
to you. We often think of dying as something that happens only
when we're old. You may never have really considered the reality
of your own death before. Now, suddenly, you are HIV+ and your
mortality becomes very real. You may be afraid of pain, of
hospitals, or of becoming unattractive to others through an
Your reaction to the idea of getting sick or dying could go one
of two ways. You may decide that you are definitely going to
live and that there is no way that this virus is ever going to
"get" you. This is a form of what's called denial--refusing to
face some of the possibilities of living with HIV. If you find
yourself feeling this way, try to keep in mind that having hope
to go on with your life is good. However, it can become
dangerous if it keeps you from taking care of yourself.
The other way you might choose to deal with the subject is by
deciding that you are absolutely going to die of this and there
is nothing you can do about it. If you go this way, you may find
yourself fantasizing about your own sickness and death. You have
to keep in mind that there are many people who are HIV+ living
productive, happy lives, and you can be among them if you
choose. It's good to face up to the possible consequences of
this infection, but not to the point that living today becomes
less important that your fear of the future. It helps to remind
yourself that everyone will die, but that doesn't prevent most
people from living today.
One of the truths of testing HIV+ is that once you know, you can
never not know again. For better or worse, your life will always
be different now. You may be experiencing great feelings of loss
about this. You may feel certain that certain areas of your life
are now in the hands of doctors, insurance companies, or
symptoms. This can make you feel as though you have less control
over your own life and may cause you incredible anxiety.
Know this--you do not have to give up control of your life. By
arming yourself with information and deciding what is right for
you, you will soon realize that you are still the same person
you were. It is your life, your body, your health, and no matter
how well-meaning your family, your friends, or your doctor may
be, they have no right to take control of your life. Allow
yourself to take some time to decide what you want to do. Then
go do it.
You may find that many of the priorities in your life change
rapidly. If you are considering making major changes in your
life, just make sure that you think them through carefully. Many
HIV+ people have made huge changes in the way they live. Many
have broken bad habits, such as drinking too much or smoking.
Some have gotten out of bad relationships or quit jobs they
really hated. Facing the possibility of getting sick or dying
has made many of our lives much better because it has made us
take action in areas we have previously ignored or repeatedly
put off. Mortality can be a great motivator
Some people blame themselves for being HIV+. This kind of guilt
and self-hate is very destructive. Regardless of how you were
infected, you did not go somewhere or do something with the
intention of infecting yourself--so why beat yourself up about
it? You are facing enough right now; you don't need to punish
yourself for testing HIV+ also.
Grief, or extreme sadness, is one of the emotions that HIV+
people face at some point. You may be grieving for yourself,
facing the possibility of your own death. For many of us, the
virus is not only affecting our lives, but the lives of those we
love. Many have lost friends and loved ones to HIV, or have many
people in their lives who are also HIV+. Allow yourself to
express grief and fear in some way. Permit yourself to cry.
These feelings are valuable and normal; ignoring them will not
make them go away.
You may also feel that you are now damaged in some way--that no
one will want to touch you or love you or that you are less
desirable because you are HIV+. You may feel that you will never
be able to love again, that no one would want to be with you if
they knew that you were HIV+. These feelings will pass. You are
not "damaged goods." You are still a valuable person, as capable
of giving and receiving love as ever. You can make your own
decisions, relax, and enjoy each day. This may be a struggle and
you may have to find new ways of coping with daily life, but
it's worth it.
Many of us have been raised with the idea of "rugged
individualism," that we must face things on our own, that this
is what "strength" is all about. Asking for help or reaching out
for support are often considered weaknesses. Consequently, a
very common response to testing HIV+ is withdrawal. We isolate
ourselves, hiding the news of our status. This can be very
Your life does not have to be doom and gloom. It is possible to
have a very positive attitude as a person with HIV--millions are
doing it right now--but it is much more difficult to get on with
your life and live happily if you're trying to do it alone.
There's no need for you to handle this by yourself, and it's
probably a mistake to even try to do it. You are not the only
person facing this. Learn who the others are and what they have
to offer. Just hearing how someone else has adjusted to living
with the virus can be enough to help you realize that life is
still good, that you can still have love and laughter. And you
may also be surprised to learn that your own sharing can help
others. In sharing the issues that concern us, each of our
voices lends strength to others.
Support groups, like those at Body Positive, are a powerful
means of learning to cope with tihs new beginning. There are
support groups offered by HIV/AIDS organizations across the
country. If you don't know of an HIV/AIDS organization in your
area, call us at (212) 566-7333. If there's no support group in
your area, you may just be the person to get one started. Just
remember: those millions of people living successfully with HIV
are people who've reached out to get the help they needed.
Wherever you are, you can find support, or the means to create
it. It just doesn't make sense for us to face the same issues
without helping each other out. We are not alone. And neither
"You are not alone" has been translated into five languages and
reprinted by nearly 300 HIV/AIDS publications around the world.
The Body Positive (19 Fulton St. Suite 308-B, New York, NY
10038) runs a helpline at 1-800-566-6599.