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First Steps

Testing Positive and Taking Charge

This is an excerpt from There is Hope: Learning to Live with HIV, 2nd Edition, written by Janice Ferri, with Richard R. Roose and Jill Schwendeman, a publication of The HIV Coalition.

Testing Positive

If you've recently tested positive for HIV or been diagnosed with AIDS, it's only natural to wonder what you can do about it. In fact that's a very healthy sign. It means you want to get a handle on this thing -- find some way to control it instead of letting it control you.

The good news is, to a great extent you can control it. As little as ten years ago, there were few treatments available to slow down the virus or prevent infections. Now doctors have a number of good tools to help you live longer and healthier, with more in development all the time.

The not-so-good news is, HIV disease can be very unpredictable -- and it's hard to fight what you can't forsee. Michael Callen, a long-term survivor who recently died, described it this way:


"I thought I'd made a separate peace with AIDS, but it's continually negotiating in bad faith. AIDS is a wily adversary. One cannot turn one's back for an instant. The moment you feel you've wrestled it to the ground, it slithers out from under you, to return in another form at another time in whatever way you'd least expect."

from Surviving and Thriving with AIDS: Collected Wisdom, Volume Two. c 1988, People with AIDS Coalition, Inc. reprinted with permission.

Squaring off against HIV means preparing for the battle of your life. There are several steps you can take right now to fight this disease and live better in the process. They include:

  • Taking charge of your own life and health;
  • Finding the right doctor and learning to work together effectively;
  • Exploring the range of treatments;
  • Deciding whether, when, and how to tell others; and
  • Learning to live with HIV (emphasis on living).

If you're ready to begin that process ... read on.

Taking Charge

No matter what type of personality you have, finding out you have this virus can knock the wind out of you. If you're used to being in charge, HIV may seriously undermine your confidence. If on the other hand you've spent your life drifting along rather passively, it can feel like one more unfair thing conspiring against you.

Taking charge of your life and health is one of the most important first steps in learning to live with HIV. If being in control came easily to you before your diagnosis, with time and support it should again. You already have the inner resources to deal with this from a position of strategy and strength. You'll just have to develop a new set of tactics.

If you've never thought of yourself as being in control of your life, the command to "start now" might sound very intimidating. It would be very easy and comfortable to just continue in your pattern of letting things happen around you and to you. The thought of letting others take care of you and handle things for you during this frightening time may seem tremendously appealing.

The trouble with this passive way of thinking is that it shuts you out of the process. Once you turn your care over to others it's very difficult to take it back. You become an outsider in the decisions that are made about your life and your body. If down the road you become uneasy or dissatisfied with the way your illness is being handled, you'll have a much harder time making changes than if you had a clear, active role right from the start.

Fortunately, taking charge is something you can learn. It may not be easy. There may be times when you'll be tempted to just give in and let others take over for you. By resisting these urges and staying involved, your chances for survival will be that much greater.

Taking charge means learning to:

  1. Put yourself first.
    Decide once and for all that you're the single most important person in your life. Sometimes, this will mean putting your needs ahead of others', uncomfortable as that might make you. Still, this is no time to "settle." Your health and quality of life are simply too important now.

    Putting yourself first does not mean cutting yourself off or abandoning your responsibilities. It does mean being able to say "no" at times--or at the very least, "Let's discuss it." You might find this difficult at first. You may feel guilty or wonder if you're being too selfish. If you feel extremely anxious or torn, talking to a counselor might help ease your mind.

    Once you decide and believe that you're "number one," it will become apparent to the rest of the world, too. People will treat you with more respect because you'll respect yourself, and it will show. If you act like you're in control, others will treat you accordingly. If you act helpless and lost, chances are you will be.

    There may be someone in your life for whom your growing sense of control may be a challenge. A partner, friend, or relative may be used to you being a certain way they liked, or which may have served their needs more than yours. If this is so and the relationship is important to you, you might try talking with this person about their fears. Together, you may be able to negotiate ways for both of you to feel more comfortable and have your individual needs met.

    If anyone in your life threatens you with violence or is abusive in any way, it's time to step away from them. Take yourself and any children you have to a safe place, talk with someone you trust, and assess whether the abuser is likely to change his or her behavior. You need a positive environment and supportive people in your life. You have the power and the right to choose to be with those who respect and support you.

    Many women give into the temptation to put their children's welfare ahead of their own. It's easy to do, especially when you have a lot to think about and are stretched too thin. It's important to protect your kids, but you are as worthy of good care as your family. When you take care of yourself, you are doing something good for yourself and your kids. You are showing them that you care enough about them to make sure that you are as healthy as you can be. You're also demonstrating an important lesson every child needs to learn:how to love yourself.

    Another part of putting yourself first is learning to see yourself as a person living with HIV or AIDS--not a "victim" or "sufferer" or someone "stricken with" the virus. By the same token, you are not an "AIDS patient" unless you are in hospice or at your doctor's office or in the hospital for an AIDS-related illness. You are a person, not a condition! The media is quick to assign labels and the general population is equally quick to pick up on them. Don't buy into these misguided attitudes--or hesitate to set others straight when they display them.

  2. Trust your own instincts.
    No matter how well informed or well meaning they may be, other people cannot know what's best for you without your input. That's because they're not walking around inside your skin--you are. Only you know exactly how you feel, physically and mentally, at any given moment. Only you can hear that little voice in the back of your head saying, "Go for it!"or "Don't do it!" If something is making you nervous or uneasy, even if you can't put your finger on why, there's probably a very good reason. The survival instinct is one of the oldest and most powerful known to exist. Listen to what it's telling you.

  3. Educate yourself.
    It's impossible to "face reality" unless you understand exactly what that "reality" entails. The more you know about your disease, the more you'll be able to contribute to the decision-making process. Having accurate information helps you feel strong and capable. You'll have more confidence in your own input and be better equipped to resist suggestions that you don't agree with. In short, "knowledge is power"--and power is what you need to take charge fully.

  4. Give yourself time.
    Few people are comfortable making snap judgments about life and death matters. Unless you're very ill and need to make treatment decisions quickly, you can afford to take time to think things through. This is not a luxury, but a necessity. When a person feels pressured or has an "every second counts" mentality, judgment often suffers. Don't allow others to rush you, and don't rush yourself with so much at stake. Get used to the idea that you do have time! Depending on your personal situation, you can probably take a few weeks (or even longer) to mull over a key decision or devise your "battle plan."

  5. Make decisions strategically.
    Responsible decision-making is a process, not an event. You owe it to yourself to uncover all the facts and weigh all the pros and cons before deciding on any aspect of your care. Others can help, but no one can do it for you.

    The strategic approach does not have to be limited to decisionmaking, but can enhance your life in many other ways. Take routine visits to a clinic or social service agency. To approach them strategically, you'd study the set-up there and determine how you could make it work to your advantage. This might mean getting in early so you can be first in line, having all your paperwork collected and filled out before you present it to the staff, and making friends with key people who can help you expedite things.

    Your observations will lead you to many other examples--the purpose being to smooth your way and save time and energy for more important or enjoyable pursuits. Which, after all, is a big part of what "being in charge" is all about.

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This article was provided by HIV Coalition (HIVCO).
See Also
Day One With HIV: Finding Out Your Status, in Your Own Words's HIV/AIDS Resource Center for the Newly Diagnosed
More "Just Diagnosed" Info