A Patient’s Guide to Living with HIV

In the United States, more than one million people are currently living with human immunodeficiency virus (HIV). Over the past 30 years, much of the stigma and misconceptions around the disease have disappeared. Better information and education have helped more people better understand the disease, the people who have it, and the changes those people must make because of their diagnosis. Still, thanks to advances in medication and treatment programs, life with HIV is becoming easier and more enjoyable. Here, learn about ways you can talk with your doctors, start treatments, and manage the stress and lifestyle changes associated with an HIV diagnosis.

You Have Your Diagnosis. Now What?

If you are diagnosed with HIV at an anonymous clinic or anywhere other than your primary care physician’s office, it’s a good idea to make an appointment with your doctor immediately. Let him or her know your diagnosis. Your doctor may want to see your test results and get additional information about your diagnosis, including how you were exposed to HIV, if you have any other sexually transmitted infections, and if you have any additional risk factors for HIV, including intravenous drug use or a history of unsafe sex. During your appointment, your doctor may want to conduct a full physical exam. This helps establish a baseline, a point to which he or she can refer 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, which measure the disease’s effect on your immune system.

At this point, the two of you will also want to begin discussing how you will proceed with treatment. Some doctors prefer to start patients on antiretroviral medications right away. Some doctors will allow patients to wait a while before beginning any medication treatments. The choice is ultimately up to you. Discuss any concerns you have about medication. Starting HIV medication therapy is a commitment—you will likely be on this medicine for the rest of your life. 

Keep a Journal

An HIV diagnosis can be overwhelming, not to mention confusing. Help yourself keep track of all the information your doctors and health-care providers give you by keeping a journal. Write down what your doctor tells you, any questions you may have, or any things you want to research. If you begin taking a medicine, 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

A diagnosis can be devastating, but you do not have to face it alone. If you do not know anyone who has been diagnosed with HIV, you may find you feel alone or secluded, unsure of where to turn. This can be especially scary as you begin making choices about treatment and medicines and whether or not to reveal your diagnosis to partners, friends, and family members. Contact your local hospital to see if an HIV/AIDS support group is available in your area. Online support groups are also available.

Lead a Healthy Life

Medication, while important, isn’t the only treatment option. If you take good care of your body, it will take better care of you. Plus, a healthy lifestyle helps prevent other potential 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 30 minutes of exercise five days a week. More is better here, too.

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 does not contain 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. These 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; others may reduce the efficacy of medications. Not everyone should use alternative treatments—and no one should begin one without first discussing it with his or her doctor. 

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, or an ineffective combination of medicine. If you think your medicine 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 to your visit, and discuss the concerns you have about your medicine. He or she may agree with you that it’s time to change your treatment plan.

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