What If My HIV Test Is Positive?

It's certainly the kind of question that naturally comes to mind, often well before a person even considers getting tested. It's the period of time when people will mull their possible response to an HIV diagnosis and try to get a better idea as to whether they'll be able to cope.

And while it may be valid to say that being HIV-positive is far different than it was 20 (or even 10) years ago, that doesn't mean you won't experience feelings of panic, fear, sadness or even anger when hearing the news. At the same time, it is not unusual for a person to respond positively, allowing them to change their lives, relationships and priorities for the better.

Identifying what you should do when receiving an HIV diagnosis should always begin with a few basic facts, namely:

Woman receiving news from doctor
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What Does HIV-Positive Actually Mean?

An HIV-post diagnosis means that you have been given an HIV test, either in the form of a blood or saliva test, and that it has confirmed the presence of HIV in your body. The tests detect either HIV antibodies (which the body produces in the presence of HIV) or HIV antigens (proteins on the surface of the virus). Newer combination tests test for both HIV antigens and antibodies.

An HIV-positive diagnosis means that you have been infected. And while you cannot be cured of the infection, you can receive treatment to ensure that the virus cannot damage your immune system and, in turn, make you vulnerable to a wide range of opportunistic infections.

An HIV-positive diagnosis does not mean you have AIDS. AIDS is simply a stage in the disease where the body's immune system has collapsed and the risk of illness is high. This most often happens when the disease is untreated, resulting in a greater risk of AIDS-defining illnesses.

Today it is recommended that HIV therapy (using drugs called antiretrovirals) be started at the time you are diagnosed. By testing and treating early, before the immune system is significantly damaged, you will have a greater opportunity to live as long and as well as anyone else you know.

What Is the First Thing I Should Do?

Start by identifying your feelings and allow yourself to feel exactly what you do. If, however, you feel unable to cope, it's important that you reach out to someone and to not isolate yourself. You may not be feeling comfortable to reveal your diagnosis to family or loved ones, but you can take time to speak with a counselor at the testing site, get referrals to local community health organizations, or referrals to doctors in your area who specialize in HIV.

Alternately, contact your regional 24-hour AIDS hotline for support, advice or referrals. There are also a number of tips you can use to find the HIV specialist who is right for you.

It is important to understand that while you may feel unsteady and need time to process the news, you shouldn't put off acting, especially if you have any symptoms or illnesses associated with HIV. Coping is not an event but a process and taking control is the first to build the coping skills you need.

Scheduling Your First Doctor's Appointment

The aim of your first doctor visit is to find someone who is not only knowledgeable and experienced but is someone with whom you can forge a long-term partnership. HIV is a chronic disease, meaning that it requires on-going monitoring and therapy.

You, therefore, need to find someone who is not your "friend" per se, but someone with whom you can be honest and open. This, too, can be a process. Ultimately the aim is to find a doctor who has (a) ability, (b) availability, and (c) affability in that order.

Once you meet, you will likely be given tests to determine the status of your immune system and the level of viral activity in your body:

  • The first test will be the CD4 count, which literally counts the number of so-called CD4 immune cells in a sample of blood. The more CD4 cells, the stronger the immune response.
  • The second test is the HIV viral load, which tell us how may HIV particles are in a sample of blood. The higher the viral load, the more HIV there is in your blood.

These tests will then be used to select which combination of antiretroviral drugs are prescribed. Other tests may be used to determine which drugs will work best for you with minimal side effects and the easiest daily dosing schedule.

The aim of therapy is to prevent HIV from reproducing in your blood, which the drugs accomplish by interfering with the virus' replication cycle. By taking your drugs every day as prescribed, you will be able to suppress the virus to "undetectable" levels—meaning that the virus cannot be detected in viral load tests.

(This does not mean that you have gotten rid of the virus, but simply have suppressed activity to levels where the virus can do little if any, harm.)

HIV Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

Doctor Discussion Guide Woman

Getting the Support and Peace of Mind You Need

Support and peace of mind mean different things to different people. To some, it means reaching out to others for emotional support to better deal with one's fears and anxieties. To others, it may mean addressing the cost of therapy or finding ways to prevent passing the virus to others.

Whatever the goals, working with others you trust can only benefit your ability to normalize the disease in your life. It all starts with communication and interaction if only to get a better sense of what can be done to overcome the plethora of "what if's" in your head.

Some of the best tools for normalizing HIV include:

Getting an HIV-positive diagnosis can be a life-changing event. But make it easier on yourself by not presuming the worst. Educating yourself is the first step to diminishing the shadow of fear and doubt that keep many from accessing the testing, care, and treatment they need.

Positive does not mean the end. It means change. And while scary, it can be a change for the good.

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