If you've just found out that you're HIV-positive, you may wonder about what the next steps are. The good news is that you're not alone. More than 1.2 million people live with HIV in the U.S. today and many resources can help.
After the human immunodeficiency virus (HIV) enters your body, it infects a type of white blood cell that helps your immune system fight infection. If HIV continues to make copies of itself, it can slowly kill off these white blood cells, called CD4 T cells.
Without treatment, your immune system weakens and can't fight off infection or certain types of cancer. Your CD4 T cells can get too low and cause acquired immunodeficiency syndrome (AIDS). Thankfully, new HIV medications called antiretroviral therapy (ART) can keep HIV from making copies of itself.
HIV medications can help prevent HIV from causing AIDS for many people, and that means being HIV-positive doesn't always lead to AIDS. New treatments have turned HIV into a chronic condition for many people. With a healthy lifestyle and the right medical care, many people with HIV are living long, productive lives.
Learn more about where you can turn for help, who you should tell, and what you might consider doing first. Here are a few guideposts to follow after you learn about your HIV status.
See an HIV and AIDS Doctor Right Away
After finding out you have HIV, it may be harder to take action at first for many reasons. For some people, seeing a doctor with experience treating HIV and AIDS can help. Make an appointment as soon as you can. It can give you comfort to know you're taking care of yourself and getting the right help.
Your doctor can run tests to check how:
- Well your immune system is working
- Fast the HIV is progressing
- Healthy your body is overall
This information can help you and your doctor come up with the best treatment plan for your health. You'll decide when and how to begin treatment. HIV medications can help you:
- Slow or prevent the progression of HIV to AIDS
- Protect your sex partner(s) from getting HIV
- Prevent complications, including serious illness and death
Learn What It Means to Be HIV-Positive
Information is power, especially when it can save your life. Steps like these can help you take an active role in your care:
- Read about HIV in other sections of this website.
- Seek information from government or nonprofit educational organizations with a focus on HIV and AIDS.
- Learn about experimental and standard HIV treatments, as well as their side effects.
- Talk with others who are HIV-positive.
Seek HIV-Positive Support Services
A wide range of people can provide emotional and physical support as you navigate your HIV diagnosis and treatment. Seek the help you need – whether it's getting a ride to your doctor visits or simply finding a sympathetic ear.
Here are some steps you can take right away:
- Ask your doctor about local HIV and AIDS support groups. Or ask for a referral to a mental health professional, such as a psychologist, psychiatrist, or clinical social worker.
- Find message boards or chat rooms online. Discuss with your doctor the information you get from these sources. Some are accurate; some are not.
- Find a hotline by looking online under "AIDS, HIV Educational Referral and Support Services" or "Social Service Organizations." A person at the hotline can give you practical advice or emotional support over the phone. They can also refer you to local HIV and AIDS self-help organizations.
Tell Certain People
You don't have to share your HIV diagnosis with everyone. You can choose who you share this information with, but some people may have a legal right to know. You may want to tell others voluntarily.
Here are some guidelines to help you decide who to tell:
- Sexual partners. There are 34 states and two U.S. territories that have laws criminalizing exposure to HIV. Eleven states require anyone with an STD to tell others of their status. Even if it's not mandatory, consider telling other people about your HIV status if their safety may depend on it.
- Needle sharers. Twelve states require you to disclose your HIV to anyone who shares your needle to inject drugs.
- Health care professionals. Other than your HIV doctor, you're usually not required to tell your other doctors, dentists, nurses, or health specialists. But letting them know about your HIV can give your other health care professionals a full picture of your health. And this may help them better take care of you.
- Family and friends. For the most part, this is your call. Opening up about your HIV may bring you emotional and other support, as well as help during your treatment or medical emergencies.
- Employers. You don't have to tell your boss or the company you work for about your HIV, unless there's a valid concern about accidental exposure to blood or other safety issues. If you have questions about disclosing or possible discrimination, you can always ask your HIV counselor, or you can contact the Equal Employment Opportunity Commission (EEOC) or the Department of Justice (DOJ).
Protect Others From Becoming HIV-Positive
HIV can infect other people, even if you don't have symptoms or don't feel sick. Without HIV treatment, your risk of passing HIV is higher through unprotected sex or by sharing needles. But you can protect others by taking an HIV treatment called antiretroviral therapy, or ART.
Medications can stop the virus from entering your cells and making copies of itself, and it can prevent HIV from spreading to others. After you start ART, your doctor will test the number of viruses in your blood. HIV medication can help you get to "undetectable."
It's called U=U, undetectable equals untransmittable. That means your doctor can't find HIV in your blood, so you can't spread HIV to other people. You can also use condoms and clean needles (if you use drugs) to help protect yourself from other strains of HIV, too.
If you have HIV and get pregnant, keep taking ART to prevent spreading the virus to your baby during pregnancy, birth, or breastfeeding. Ask your doctor what you can do to protect your child. ART treatment has nearly wiped out the spread of HIV to newborns in the U.S.
Preexposure prophylaxis (PrEP)
If your partner doesn't have HIV, they have many options to protect themselves. It's called preexposure prophylaxis (PrEP) and comes in two forms, a pill or shot. They'll take PrEP before having sex to keep them protected and lower their risk of getting HIV.
The pill is taken daily, but the shot can come as a bimonthly injection or twice a year.
Missing a dose
A great advantage of HIV treatment, along with protecting your own health, is that an undetectable virus load means you can't transmit HIV to others (at least sexually). But it's always a good idea to use condoms in case someone forgets their PrEP pill or other HIV medication.
If you or your partner misses a dose, there's a risk that HIV may pass between you. Keep in mind that HIV treatments and PrEP don't protect you from other types of sexually transmitted diseases, but a condom does.
If you do miss a dose of your ART or PrEP, your doctor can help you take pills to get the medication levels back up inside your body again.
Monitor Your Health
Keep your doctor appointments. You'll have blood drawn every few months, especially in your first year. These tests can tell you:
- Your HIV viral load (how many viruses you have in your blood). It lets you know how well your HIV medicines are working.
- Your CD4 T cell count. It lets you know how well your immune system responds to treatment.
The visits also will give you a chance to ask your doctor questions.
Watch for Complications
Without treatment, HIV weakens your immune system, so you may get sick more often or get sicker than people without HIV. The list of "opportunistic infections" you may get includes pneumonia, diarrhea, fungal infections, and tuberculosis.
Be alert to any symptoms that should be checked by your doctor, including:
- A white coating in the mouth (thrush)
- Breathing problems or a nagging cough
- Purple, pink, or brownish splotches on your skin
- A rash, which could be a reaction to meds
- Vision problems, eye pain, or being sensitive to light
- Numbness, prickles, or pain in your hands and feet
- A stiff neck
- Lower belly cramps or pain
- Severe diarrhea
- Swollen lymph glands, especially on one side of your body
- Confused thinking
- Balance problems
Accept Your New Normal
Living with HIV marks a new phase of your life. But if you take your HIV medicines as prescribed, it can be as healthy, active, and fulfilling as before.
Make it a priority to take care of your body and mind. Get help if you feel down, anxious, or depressed. Try to stay connected to people in your life who love and support you.
