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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.

How to Take an Active Role in Your HIV Treatment

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

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

Learn about your diagnosis
You probably already have a good grasp of the basics—HIV is a virus that attacks infection-fighting cells in your body. Over time, this infection can compromise your immune system, making you more susceptible to developing other infections and diseases—most notably, acquired immunodeficiency syndrome (AIDS).

Take the time to learn more about HIV—long-term health considerations, how to reduce the chances of it spreading to others, 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 feel. This information can help you feel more in control and more equipped to talk to your healthcare providers.

Learn about treatment
Healthcare providers have learned a lot about HIV since the first cases were reported in the United States in the 1980s—especially when it comes to treatment.

Today, the standard for HIV treatment is antiretroviral therapy (ART). This involves taking oral medications that stop the virus from replicating, suppressing the viral load (the amount of HIV in the body) to undetectable or near-undetectable levels. This prevents the virus from damaging the immune system, which helps prevent an HIV infection from progressing into AIDS or causing other complications. It also helps minimize the risk of transmitting HIV to other people, including sexual partners.

To achieve maximum benefit, ART drugs must be taken exactly as prescribed—which is every single day for the duration of a person’s life. For someone on ART therapy, it helps to know how these medications work, the strengths and limitations of these medications, and the different types of ART available should you need to switch medications.

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

Remember that your healthcare team will be your best source of information. When you have questions—about lab results, about how to take your medication, about possible side effects—ask your healthcare team. 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 a chronic infection. Because HIV can impact the functioning of your immune system, you want to do everything you can to keep your body healthy and avoid illness and complications. Eating a well-balanced diet, exercising, getting enough sleep, and avoiding unhealthy habits (like smoking, alcohol use, and drug use) are essential.

Focus on your mental health
Living with a serious illness like HIV can take a toll on your mental and emotional well-being. 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 doing on a day-to-day basis better than anyone else.

Medically reviewed in August 2021.

Sources:
Centers for Disease Control and Prevention. "What does an HIV diagnosis mean?"
Positive Women's Network. "#PWNCares: Be Your Own Best Advocate Supports Women Recently Diagnosed with HIV to Advocate for Their Needs with Health Care Providers."
Matt G. Mutchler, Glenn Wagner, et al. "Improving HIV/AIDS care through treatment advocacy: going beyond client education to empowerment by facilitating client–provider relationships." AIDS Care, 2015. Vol. 23, No. 1.
TheBodyPro.com. "Building a Cooperative Doctor/Patient Relationship."
UpToDate. "Patient education: Initial treatment of HIV (Beyond the Basics)."
Avert.org. "History of HIV and AIDS Overview."
HIV.gov. "Newly Diagnosed with HIV."
HIV.gov. "Managing Your HIV Medical Appointments."
Centers for Disease Control and Prevention. "Can HIV affect my diet and nutrition?"
UpToDate. "Patient education: Preventing opportunistic infections in HIV (Beyond the Basics)."
HIV.gov. "Why Is a Good Diet Important for People with HIV?"
HIV.gov. "Should People Living with HIV Exercise?"

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