If you've just found out that you're HIV-positive, you may feel overwhelmed, fearful, and alone. But you’re far from alone. People and resources are available to help you and the more than 1 million HIV-positive people living in the U.S. today.
It may help to remember that being HIV-positive is not the virtual death sentence it once was. HIV (human immunodeficiency virus) can lead to AIDS (acquired immunodeficiency syndrome). But being HIV-positive does not necessarily mean that you have AIDS. New treatments have turned being HIV-positive into a chronic condition for many people. With a healthy lifestyle and the right medical care, many HIV-positive people are living long, productive lives.
Still, learning that you are HIV-positive may leave you reeling. Where should you turn for help? Who should you tell? What should you do first? Here are a few guideposts to help you through this difficult time.
See an HIV and AIDS Doctor Right Away
After finding out you have HIV, fear about the future may make it hard for you to take action. But once you know you're HIV-positive, see a doctor with experience in HIV and AIDS as soon as you can. Don't put it off. Your doctor will run tests to see how well your immune system is working, how fast the HIV is progressing, and how healthy your body is overall. With this and other information, your doctor can work with you to come up with the best treatment plan, including when and how to begin treatment. HIV drugs can often slow or prevent the progression of HIV to AIDS. Left untreated, though, HIV can lead to serious illness and death.
Learn What It Means to Be HIV-Positive
Information is power, especially when that information can save your life. These steps will allow you to 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 help get you the emotional and physical support you may need to cope with your diagnosis of HIV. Seek the help you need -- whether it's getting a ride to 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. But some people may have a legal right to know. You may want to tell others voluntarily.
- Sexual partners. There are 32 states which have laws criminalizing exposure to HIV and laws in 10 states, that require people with HIV who are aware of their status to disclose their status. Even if it’s not mandatory, consider disclosing your HIV status to people whose safety may depend on it.
- Needle sharers. Three 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 almost never are required to tell your other doctors, dentist, nurse, or other health specialists. But they may be better able to take care of you if they have a full picture of your health.
- Family and friends. For the most part, this is your call. But opening up about your HIV may bring you emotional and other support, as well as help during your treatment or medical emergencies.
- Employers. Your boss and company do not have a right to know about your HIV status unless there is a valid concern about accidental exposure to blood and other safety issues. And if you’re worried about possible discrimination, it may be best not to tell.
Protect Others From Becoming HIV-Positive
Because you're HIV-positive, you can give the virus to others, even if you don't feel sick. This can happen through unprotected sex or by sharing needles. You can protect others by using condoms and clean needles. By doing this, you can also protect yourself from other strains of HIV. Also, don't donate blood.
If you are a woman, you can spread HIV to your baby during pregnancy, birth, or breastfeeding. Ask your doctor what you can do to protect your child. Proper treatment has nearly wiped out the spread of infection to newborns in the U.S.
Uninfected sexual partners can take a daily pill called PrEP (pre-exposure prophylaxis) for extra protection against HIV. PrEP is also now available as a bimonthly (every other month) injection.
A great advantage of getting on HIV treatment, in addition to protecting one's own health, is that those with undetectable virus loads will not transmit HIV to others (at least sexually). However, the use of condoms should always be considered because of possible lapses in therapy (during which one could transmit HIV to others) and the potential for (bidirectional) transmission of other STIs.
Monitor Your Health
Keep your doctor appointments. You’ll have blood drawn every few months, especially in your first year. These tests track your HIV viral load, which tells how well your HIV drugs are working, and your CD4 count, which shows 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, 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 depressed, and stay connected to people in your life you love and who support you.