Finding out you have HIV can jolt your world. Fortunately, it can be a manageable long-term condition, not unlike diabetes or heart disease. With treatment, many Americans who have HIV live almost as long as those who don’t have it.
Along with your new diagnosis, you’ll face a number of key decisions to make and actions to take.
Get a Baseline Checkup
Even though you’re HIV-positive, you might not feel sick or any different. But it’s important to get a thorough medical evaluation so you can track how your health changes over time. Your doctor also uses the information to decide which medications might work best for you and the right time to start taking them.
You can see your regular doctor, visit your local public health clinic, or find a doctor through the U.S. Department of Health and Human Services’ HIV treatment directory. Or call the HIV/AIDS hotline for your state.
HIV treatment is called antiretroviral therapy (ART), and you should start taking it right away. The drugs, which you’ll take every day, aren’t a cure. But they’ll keep your infection from getting worse and sharply cut down the number of viruses in your body. You’ll stay healthier, live longer, and be much less likely to pass HIV to others.
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. Thirteen states require you to disclose your HIV before you have sex with someone. Only Indiana and North Carolina require you to notify previous sexual partners. Even if it’s not mandatory, consider disclosing your HIV status to people whose safety may depend on it.
- Needle sharers. Four 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 are almost never 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, and Yourself
- Always use condoms for sex. Antiretroviral therapy may keep your viral load so low that you’re unlikely to pass HIV to others. Still, don’t rely on your medication alone. Condoms also will protect both you and your partner from other STDs like chlamydia, syphilis, gonorrhea, and herpes.
- Don’t share needles.
- Don’t breastfeed. HIV can pass to your baby through your milk.
- Uninfected sexual partners can take a daily pill called PrEP (pre-exposure prophylaxis) for extra protection against HIV.
Learn what HIV is and what it isn’t. Knowing the facts will help you make smart decisions about your disease. Being informed also may let you better handle any fear and uncertainty.
A good place to start is the U.S. Department of Health and Human Services HIV website, HIV.gov.
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
HIV, if untreated, 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 nagging cough
- Purple, pink, or brownish splotches on your skin
- A rash, which could be a reaction to meds
- Vision problems, light sensitivity, or eye pain
- Numbness, prickles, or pain in your hands and feet
- Stiff neck
- Cramps or pain in lower belly
- Severe diarrhea
- Swollen lymph glands, especially on one side of your body
- Confused thinking
- Balance problems
Tap Into Support
Connect with groups or individuals who understand what you’re going through. Check with your medical clinic or your local or state health departments. Or local nonprofit support groups. If you join online chat groups or message boards, keep in mind that the information you gather may not always be accurate.
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.