Living with HIV
Life continues after becoming HIV positive. Thanks to new treatments, many people with HIV are living long, healthy lives. It is very important to make sure you have a doctor who knows how to treat HIV. A health care professional or trained HIV counselor can provide counseling and help you find an appropriate doctor who will advise you regarding treatment regimens. Peer support and other support groups can also be very helpful for management of HIV.
How is HIV treated?
HIV is treated with anti-retroviral therapy or ART. This may involve taking a once-daily pill, a few pills a day, or getting shots every few months. These medications stop the virus from reproducing in your body. If it can’t reproduce, it can’t attack your immune system. It’s important to start ART as soon as possible to keep your immune system healthy.
Blood tests can measure how much virus is in your blood. This is called the viral load. The goal of ART is to reduce your viral load as much as possible. Many people on ART have viral loads so low that tests can’t find any virus in the blood. This is called undetectable.
People living with HIV who have undetectable viral loads cannot transmit HIV to their sexual partners.
FAQs about ART
What medications are used for ART?
HIV treatment has come a long way since the virus was discovered. Today there are over 8 types of drugs and over 20 brand name or generic medications that help people living with HIV stay healthy. People on antiretroviral therapy (ART) usually take a combination of two or three HIV medications but sometimes this can be done with one daily pill. Your health care provider can talk in more detail about the types of drugs and names of medication or you can read more on the National Institutes of Health’s website.
Do I have to take ART every day?
A lot of people do take one or more pills as part of their ART regimen each day. There are now some medications that can be given as a long-term shot, but they’re not right for everyone. Talk to your HIV care provider about the best medication for you. It can be a drag to take medication every day, but it’s worth it to stay healthy and keep your partners healthy.
Do HIV medications have side effects?
Sometimes. Like all drugs, HIV medications may have side effects. Some people get tired or dizzy. Others have nausea or diarrhea. Many people can manage these with over-the-counter remedies. Side effects often go away after you’re on the medication for a little while. If they don’t get better, you can talk to the provider who prescribed your medication. They might be able to help you manage the symptoms or pick a different medication that works better for you.
How do I get ART?
There are a lot of ways you can get ART. The most important thing is that you start it as soon as possible.
Ask your health care provider (if you have one) if they can treat you for HIV. If not, they can hopefully refer you to someone nearby. There are other ways to find an HIV care provider.
- Ryan White HIV/AIDS Program. This program provides care and support to low-income people living with HIV. You can find a Ryan White site near you.
- Your state may also have an HIV/AIDS hotline that can help you find services.
- You could find a health center near you. You can search this list by zip code.
- You could also look at this list of health care providers across the country who specialize in HIV care created by the American Academy of HIV Medicine.
- There are also online telehealth providers that can prescribe and manage ART.
Do I have to stay on ART my whole life?
Probably. As of right now, ART is the only treatment available for HIV, and people living with HIV have to be on it for their whole lives. If you stop taking your medication, the virus can start reproducing and attacking your immune system, and you could start getting sick.
That said, the science around HIV has been remarkable. When the epidemic first started there was no treatment, and no one could imagine the kinds of medications we have today. There’s a lot of research still happening which means that even better treatments might be available soon.
What does undetectable mean for someone on HIV treatment?
HIV treatment stops the virus from reproducing. The goal of treatment is to have as little virus in your blood as possible. Blood tests can check how much virus is in your blood. This is called your viral load. If your viral load is so low that regular blood tests can’t find any virus, it’s called undetectable.
Being undetectable helps keep you healthy. And, if you’re undetectable you can’t give HIV to a partner during sex. Experts sometimes say U=U or undetectable=untransmittable
What does U=U mean?
Undetectable=untransmittable. The goal of HIV treatment is that the virus becomes undetectable in your blood. This means regular blood tests can’t find any virus. If you are undetectable, you can’t give the virus to anyone else through sexual behavior.
How effective is treatment?
The introduction of powerful anti-retroviral therapies has made a dramatic impact. With antiretroviral therapy (called ART), people with HIV can live long and healthy lives. The goal of HIV treatment is to reduce the amount of virus in the blood, called viral load. Treatment can reduce the viral load to undetectable levels, and the virus cannot be passed on to HIV-negative partners through sex. This called U=U: undetectable. equals untransmitable.
Should I tell people I am living with HIV?
Only if you want to. HIV is like any other medical condition; it’s your information to disclose if and when you want to. HIV is not transmitted through casual contact so there is no reason that friends, family members, roommate, coworkers, or other people in your life have to know.
You may decide to tell people you trust because you want their support, especially if you’re newly diagnosed and getting used to what living with HIV looks. You may want someone to go with you to appointments, listen when you need to talk, or just know what you’re going through.
You can tell as many or as few people as you want, and you don’t have to tell everyone at once.
It is important to tell all health care providers who take care of you. Knowing that you have HIV and what medications you take can help them give you the best care and avoid other drugs that might interact with your HIV treatment.
How do I tell a friend or family member that I have HIV?
If you decide to tell a friend or a family member, you should be simple and direct. You might say, “I want you to know that I have HIV. I started treatment recently, and it’s going pretty well.”
Give the other person a chance to ask questions. People tend to be pretty nosy, and they will likely ask a bunch of questions about how or when you got HIV or even who you got it from. Decide in advance how much information you want to share. You can tell them everything, be selective about what you share, or simply tell them you don’t know or don’t want to talk about. Hopefully, they will respect your wishes.
They might know a lot about HIV, or they may still believe things that haven’t been true for decades. They may ask questions like “Does this mean, you’re going to get AIDS?” You can tell them about advances in medications and how people with HIV live long and healthy lives. But it’s not your responsibility to be an expert on HIV or to educate everyone you know. You could always point them to reliable information online instead.
Remember that you don’t have to apologize for having HIV. HIV is a health condition, not something you did wrong.
Do I have to tell everyone I have sex with that I have HIV?
Your HIV status is personal health information, and you get to decide who you tell and when. Some people tell everyone they have sex with. Others may tell people they are dating or in a relationship with but not casual partners. There are a few things to think about.
First, some states have laws about telling sexual partners that you have HIV. These laws vary, so it’s important to know the law where you live.
It’s also important to know whether you can pass HIV to someone else. If you take HIV medication and have an undetectable viral load, you cannot pass HIV through sex. This is referred to as U=U or Undetectable = Untransmittable.
If you are not on treatment, however, or have not yet reached an undetectable viral load, the conversation is a little different. You and your partner(s) will want to discuss ways to prevent HIV transmission, including condoms or PrEP.
Be honest and direct. Tell them what you know about HIV in general and your health in particular. Ask if they are taking PrEP or would consider it. Then work together to decide how you’re going to prevent HIV transmission.
How do I tell a long-term partner that I was recently diagnosed with HIV?
This can be a particularly difficult conversation because you’re probably still processing the diagnosis yourself.
Start by telling your partner what you know. Explain that you have HIV and that you are getting care. If you don’t know your viral load yet or haven’t started treatment, it’s okay to say that too.
Your partner may immediately worry about whether they have HIV. The only way for them to know is to get tested.
Your partner may also have questions you can’t answer. You don’t have to become an HIV expert overnight. It’s okay to say, “I don’t know. Let’s find out.”
You may both have strong emotions about the diagnosis. If the conversation becomes overwhelming, take a break and come back to it later. You can also ask an HIV care provider or counselor for help talking through what the diagnosis means for both of you.
What if someone rejects me because I have HIV?
Unfortunately, it can happen. There’s still a lot of stigma around HIV, and some people have outdated or inaccurate ideas about what it means to live with HIV.
It may help to explain that HIV treatment has changed dramatically. People with HIV who get treatment can live long, healthy lives. And if you have an undetectable viral load, you cannot pass HIV through sex.
But you can’t control how another person responds. Someone may decide they don’t want to have sex or continue a relationship, even after they’ve heard the facts. Rejection can hurt, whether you’ve known someone for one night or you’ve been together for years.
Just remember that their reaction doesn’t change your health, your worth, or your ability to have sex, relationships, and a full life in the future.
#AsktheHIVDoc
#AskTheHIVDoc is a series of short explainer videos from Greater Than HIV featuring top HIV doctors covering all aspects of HIV from prevention (including PrEP) to diagnosis, care and treatment, as well as the basics.