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How to Take an Active Role in Your HIV Treatment

You may have heard the phrase “be your own health advocate.” Here’s what that means for people with HIV.

Medically reviewed in August 2021

People living with chronic conditions like HIV are advised to “be their own health advocate.” Being your own health advocate means taking ownership of your diagnosis, your treatment, and your needs as a patient.

Here, we look at a few strategies that can help.

Know the basics
You may already have a good grasp of the basics of HIV infection—HIV is a virus that attacks infection-fighting cells in your body called CD4 cells.

Over time, HIV can severely deplete the number of CD4 cells in the body. This stage of the disease is known as acquired immunodeficiency syndrome (AIDS).

During this stage, the body has little defense against conditions it would normally be able to fight against or prevent, including serious infections (called opportunistic infections) and certain cancers.

Learn about treatment
Treatment should begin immediately after an HIV diagnosis. The standard for HIV treatment is antiretroviral therapy (ART).

ART involves taking medications that stop the virus from replicating. This suppresses the viral load (the amount of HIV in the body) to undetectable or near-undetectable levels. It also allows the number of CD4 cells to increase to normal levels.

Maintaining a suppressed viral load and healthy CD4 levels can prevent opportunistic infections and other complications. It also helps minimize the risk of transmitting HIV to other people, such as sexual partners and, if you are pregnant, unborn children.

ART drugs must be taken exactly as prescribed—stopping medications or taking medications inconsistently can increase the viral load, damage the immune system, and cause the virus to become resistant to treatment.

It helps to know how your medications work, the strengths and limitations of these medications, and the different types of ART available should your healthcare provider need to switch or modify the medications you take.

Learn more about living with HIV
Take the time to learn more about living with HIV, including long-term health considerations, how to reduce the chances of transmission to others, and what the experience has been like for other people living with HIV.

Also take the time to learn as much as you can about your specific diagnosis. Keep copies of all your medical paperwork and keep a journal with notes on how you are feeling. This information can help you feel more in control and more equipped to talk to your healthcare providers.

Be honest with your healthcare providers
Treating HIV sometimes means discussing uncomfortable topics with your healthcare providers—topics like sexual history, alcohol and substance use, bowel movements, mental health, and finances.

You also need to be honest about taking your medication as prescribed, and if you’ve missed any doses. Being able to be honest about these topics is important to addressing your needs as a patient and getting appropriate care.

Ask questions
Living with HIV comes with questions. Questions about your health, now and in the future. Questions about how to talk to others about your diagnosis. Questions about how to deal with stigma, stress, and the other mental and emotional burdens that are often a part of living with HIV.

Remember that your healthcare team will be your best source of information. Contact your healthcare providers any time you have a question about lab results, how to take a medication, or any symptoms or side effects you are experiencing.

Again, keeping a journal of your day-to-day experience can be helpful. A journal is a great place to keep track of questions to ask at your next appointment.

Focus on a healthy lifestyle
A healthy lifestyle is important for everyone and especially important for anyone living with HIV. Because HIV can impact the functioning of your immune system, you want to do everything you can to keep your body healthy, avoid illnesses, and avoid complications

Essential parts of a healthy lifestyle include eating a well-balanced diet, exercising, getting enough sleep, and avoiding unhealthy habits (like smoking, alcohol use, and drug use).

Focus on your mental health
Living with a serious illness like HIV can take a toll on your mental and emotional health. Talk to your healthcare providers about any difficult or negative emotions that you are experiencing, such as sadness, stress, anger, irritability, or disinterest in your usual activities. These could be signs of anxiety or depression.

Your healthcare providers can help you find coping strategies and, if needed, refer you to a provider who specializes in mental health.

Check in with yourself
Advocating for your health when you have HIV is an ongoing process. It’s important to continue to step back and assess how you’re doing on a regular basis. Check in with your healthcare providers if your needs change along the way. Remember that you know how you’re feeling on a day-to-day basis better than anyone else.

Medically reviewed in November 2021.

Sources:
UPMC HealthBeat. "How to Be Your Own Health Advocate."
Elizabeth Renter. "6 Ways to Be Your Own Health Advocate." U.S. News. February 2, 2015.
HIV.gov. "What is HIV?"
Avert. "History of HIV and AIDS Overview."
Centers for Disease Control and Prevention. "What does an HIV diagnosis mean?"
HIVPractice. "From Patient Education to Patient Empowerment."
HIV.gov. "A Timeline of HIV and AIDS."
Centers for Disease Control and Prevention. "What his HIV treatment?"
Office of AIDS Research. "HIV Treatment."
UpToDate. "Patient education: Initial treatment of HIV (Beyond the Basics)."
HIV.gov. "Why Should You Take Your HIV Medication Every Day?"
Avert. "Newly Diagnosed with HIV."
HIV.gov. "Managing Your HIV Medical Appointments."
Centers for Disease Control and Prevention. "Can HIV affect my diet and nutrition?"
National Institute of Mental Health. "HIV/AIDS and Mental Health."

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