Being diagnosed with HIV can be shocking and upsetting, but with proper care and treatment, you can live a long and healthy life. This is not to say that living with HIV doesn’t come with challenges, but it’s no longer the death sentence it was once perceived to be.
If you’re newly diagnosed, start by taking a deep breath. Take the time to learn about HIV and what it means for your health and life. Being HIV positive does not mean you have AIDS, and treatment can prevent disease progression. No matter how fearful, sad or angry you may feel, it can help to start working with a health care provider and surrounding yourself with the support you need.
Here are some tips for the newly diagnosed:
Knowing the benefits of HIV treatment may help calm your fears. Learn about your options, including when to start treatment and which medications are recommended. The amount of information can seem overwhelming at first, but the more you know about HIV, the more empowered you’ll be to get the care and treatment you need. Click here to learn the basics about HIV.
A friend or family member can be a great source of support when you’re feeling upset or confused about your new diagnosis. It’s not always easy to predict how people will respond to your news, even if you’ve known them for years. (Click here for tips on disclosure.) Consider choosing one or two people you think might best handle your diagnosis. If you’re not ready to tell anyone yet, that’s OK. Talk to other people living with HIV who can understand what you’re going through. You might consider joining a support group for people with HIV. Many AIDS service organizations—search for one at directory.poz.com—offer support groups, treatment education workshops, drug recovery programs and case management to help with legal, financial and housing needs. Online support is another option. Check out the POZ Forums, a round-the-clock discussion area for people with HIV/AIDS and their friends, family and caregivers. Facebook and Meetup also offer HIV support groups.
Find a Doctor
Establishing a relationship with a health care provider is an essential first step for newly diagnosed people. But finding someone you can trust and feel comfortable with isn’t always easy. Be open and honest about your needs because your relationship with your health care team will play a big role in staying healthy. It’s important to see a doctor who has experience with HIV care as soon as possible after your diagnosis. Your doctor will likely review your medical history, conduct a physical exam and run laboratory tests, including a viral load test and a CD4 T-cell test to determine the health of your immune system. Click here for more information about finding a doctor and accessing care.
Experts now recommend that everyone diagnosed with HIV should start antiretroviral treatment as soon as possible, regardless of their CD4 count. Modern HIV medications are highly effective, more convenient and much easier to tolerate than older meds. There’s even a new treatment that requires just one injection a month. Effective treatment can reduce your viral load to an undetectable level, which can halt disease progression and help maintain your overall health. Ask your doctor how often you should have your viral load and CD4 count checked. There is no cure for HIV, so it’s important to keep taking your medications as directed.
Prevent HIV Transmission
Learn about how to avoid passing HIV on to others. People on effective antiretroviral treatment with an undetectable viral load don’t transmit HIV to others through sex (a concept known as Undetectable Equals Untransmittable, or U=U). Condoms prevent transmission of HIV as well as other sexually transmitted infections when used consistently and correctly. If you inject drugs, use a new sterile syringe every time; many areas offer needle-exchange programs. If you’re in a relationship with an HIV-negative partner, discuss pre-exposure prophylaxis (PreP) as an additional tool they can use to protect against HIV. If your partner has had a possible exposure to HIV, have them discuss post-exposure prophylaxis (PEP) with a health care provider.
Figure Out Your Finances
HIV can pose financial challenges, but there are resources to help you afford medical care, treatment and other needs. Private insurance plans, state Medicaid programs (for low-income people) and Medicare (for seniors) vary in terms of what they cover and how easy it is to access care. Some states have expanded Medicaid eligibility up to a higher income level. For others, an Affordable Care Act (Obamacare) plan or care provided through the Ryan White HIV/AIDS Program, including its AIDS Drug Assistance Program (ADAP), may be an option. AIDS service organizations often offer case managers or financial navigators who can help. Many drug companies offer payment assistance programs (including copay cards) to help you afford your medications.
Improve Your Overall Health
An HIV diagnosis can be a good opportunity to take steps to improve your overall health. These include eating a healthy, well-balanced diet, getting enough exercise (both aerobic activities and strength training), maintaining a health weight and getting adequate sleep. If you smoke, consider quitting. Get tested for other infections, including hepatitis B and C and sexually transmitted infections. Ask your doctor which vaccines you should receive. Many people living and aging with HIV have other health conditions, such as diabetes, high blood pressure, and heart, kidney or liver disease. Work with your health care team to get the appropriate treatment.
Take Care of Your Mental Health
It’s normal to feel sadness or anxiety related to your HIV diagnosis. Sometimes this can progress to more serious depression. Exercise, activities such as yoga or tai chi, and spiritual practices, such as prayer or meditation, can often help relieve stress. Talk to your health care team about mental health resources, including therapists and support groups.
While learning about HIV and taking steps to keep yourself and your partners healthy, keep your chin up. Remember that you are not alone in this fight and that you can survive and thrive with HIV. Click here to read inspiring stories of people living with HIV.
Last Reviewed: October 5, 2021