A Patient’s Guide to Living with HIV

In the United States alone, some 1.2 million people are currently living with HIV. Over the past 30 years, many of the misconceptions and stigma that once surrounded the disease have disappeared. Information and education have helped more people understand the disease, the people who have it, and the changes those people must make because of their diagnosis.

Thanks to advances in medication and treatment programs, life with HIV is becoming easier to manage. Here’s information on how to talk with your doctors, start treatments, and manage the lifestyle changes associated with an HIV diagnosis.

Communicate with your doctor

If you’re diagnosed with HIV at an anonymous clinic or somewhere other than your primary care doctor’s office, it’s a good idea to make an appointment with your doctor immediately. Let them know your diagnosis. They may want to see your test results and get more information about your diagnosis, including:

  • how you were exposed to HIV
  • if you have any other sexually transmitted infections
  • if you have any other risk factors for HIV, such as intravenous drug use or a history of unsafe sex

During your appointment, your doctor may want to do a full physical exam. This helps them establish a baseline, or a point they can refer back to as your disease progresses. Your doctor may also want to conduct several blood tests to check your viral load and your CD4+ T-cell levels. These tests help your doctor measure the disease’s effect on your immune system.

Learn more: Understanding CD4 and viral load »

At this point, the two of you will also want to begin discussing how to proceed with treatment. Some doctors prefer to start antiretroviral medications right away. Other doctors allow you to wait a while before beginning any medication. The choice is ultimately up to you.

Discuss any concerns you have about medication. Starting HIV medication therapy is a commitment. In fact, you’ll likely be on medication for the rest of your life.

Keep a journal

HIV diagnosis and treatment can be overwhelming, not to mention confusing. Keep a journal to help you keep track of all the information your healthcare providers give you.

Write down what your doctor tells you, any questions you have, or anything you want to research.

If you begin taking medication, keep track of when you take it and if you have any side effects.

If your doctor conducts regular blood tests to check your viral loads and CD4+ T-cell levels, you might want to keep a log of that information, as well. The more information you have, the better prepared you will be as you confront this virus.

Find support

You don’t have to face your diagnosis alone. If you don’t know anyone who has been diagnosed with HIV, you may feel unsure of where to turn as you make choices about treatment, medications, and whether or not to reveal your diagnosis to partners, friends, and family members. However, support is out there. Contact your local hospital to see if an HIV/AIDS support group is available in your area. You can also find support groups online.

Lead a healthy life

Medication is important, but it isn’t the only aspect of treatment. If you take good care of your body, it will take better care of you. Plus, a healthy lifestyle helps prevent other health complications of an HIV infection, such as obesity, heart disease, and cancer.

Eat a balanced, healthy diet with plenty of fruits and vegetables, whole grains, and lean protein. Good food is good medicine. It helps keep your immune system at its best and gives you ample energy. Maintain an active lifestyle as best you can after an HIV diagnosis.

Get your shots

During cold and flu seasons, it’s important for people with HIV to get pneumonia and flu vaccinations, as long as the vaccine doesn’t use a live virus. Be sure to ask your doctor before you get the vaccine if it’s safe for you.



Consider alternative therapies

Vitamins and dietary supplements might be beneficial for people with HIV. Some can boost the immune system and help counteract negative side effects of the antiretroviral medication. But some alternative medicines can actually be dangerous when taken with HIV drugs, and others may reduce the efficacy of medications. Not everyone should use alternative treatments. And because of the risks, you should never begin an alternative treatment without discussing it with your doctor first.


Don’t be afraid to change treatments

You may not stay on the same antiretroviral therapy throughout your life. You may find you need to change. Reasons for needing to change include:

  • drug resistance
  • decreased drug absorption
  • poor adherence to the medication schedule
  • an ineffective combination of medication

If you think your medication is not as effective as it should be, or the side effects or untreated symptoms of HIV have become too great, talk to your doctor. Bring your journal with you and discuss your concerns.

Also, as new drugs become available, ask your doctor if you’re a candidate for switching. In the fight against HIV, you and your team should explore every treatment option. If your doctor seems uninterested in helping you, find a new one. You can lead a very normal life, even after an HIV diagnosis.