First Steps after Testing Positive

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.

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.

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.

Taking charge means learning to:

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.

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.

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.

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.

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."

Make good 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.