Getting an HIV Diagnosis--Your Next Steps: Entire Lesson - HIV
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Getting an HIV Diagnosis--Your Next Steps: Entire Lesson

for Veterans and the Public

Your Next Steps: Entire Lesson

Your next steps

Finding out that you have HIV can be scary and overwhelming. If you feel overwhelmed, try to remember that you can get help and that these feelings will get better with time.

Testing positive for HIV is a serious matter but one that you can deal with. Starting HIV medications early is one of the best ways to take care of your health. This guide will take you through the steps you need to take to protect your health:

  • Understand your diagnosis
  • Find support
  • Work with your provider
  • Monitor your health
  • Be aware of possible complications
  • Protect others
  • Start treatment
  • Move forward with your life

There are some things that you should know about HIV that may ease some of the stress or confusion you are feeling.

  • You are not alone. Many people are living with HIV, even if you don't know that they are.
  • HIV does not equal death: Having HIV does not mean that you are going to die of it. Most people with HIV live long and healthy lives if they get medical treatment and take care of themselves.
  • A diagnosis of HIV does not automatically mean that you have AIDS.
  • Learning how to live with HIV and getting into care and onto medications will help you to feel better and get on with your life. Your VA provider can help you connect with a health care team that knows how to manage HIV.

Understand your diagnosis

When your provider tells you that you have HIV, it means that you have been infected with the Human Immunodeficiency Virus (HIV). However, the HIV test does not tell you if you have AIDS, how long you have been infected or how sick you might be. Soon after your diagnosis, your provider will run other tests to determine your overall health, and the condition of your immune system. For descriptions of these tests, go to Understanding Laboratory Tests.

Learn about HIV

The more you learn about HIV, the better you will be at making decisions about your health. You don't have to learn everything all at once. It is important to go at a pace that is comfortable for you.

There are many ways to learn about HIV:

  1. Start with the Basics section of this site and read through all the sections.
  2. Read information online. Remember that there is a lot of internet information that can be inaccurate or misleading. Be sure to look for reputable sites whose content can be trusted. Check out government or nonprofit educational organizations that deal with HIV issues. You can find a list of them on the Resources page at the end of this section.
  3. Use your local library: The most current information may be in the library's collection of newspapers, journals and magazines.
  4. Check with your local VA medical center to see if there is an on-site library where you can find patient materials on HIV. Your provider will also likely have handouts to share with you.

Find support

Talk with others who are living with HIV. Ask your provider if they know of any support groups. Or you can search the internet for virtual groups to join. Always discuss what you learn from these sources with your provider. The information may not be accurate; and even if it is, it may not be right for your particular situation.

Finding support means finding people who are willing to help you through the emotional and physical issues you are facing. If you let the right people in your life know that you are living with HIV, they can:

  • offer you support and understanding;
  • provide you with assistance, such as helping with child care, or making medical visits;
  • learn about prevention.

Telling others

Deciding to tell others that you are living with HIV is an important personal choice. It can make a big difference in how you cope with the disease. It can also affect your relationships with people.

If you decide to share information about your diagnosis, it is best to tell people you trust and people who are directly affected. These include:

  • family members;
  • people you spend a lot of time with, such as good friends;
  • all your health care providers, such as doctors, nurses, and dentists;
  • sex partner(s).

You don't have to tell everyone about your HIV status right away. You might want to talk with a counselor or social worker first.

Support resources

Some VA Medical Centers have support groups for Veterans living with HIV. Ask your provider if your local VA has one that you can join for support and information.

Joining a group of people who are facing the same challenges you are facing can have important benefits. These include making new friendships, improving your mood, and better understanding your needs and those of your family. People in support groups often help each other deal with common experiences associated with HIV.

Support groups are especially helpful if you live alone or don't have family and friends nearby.

There are different types of support available, from hotlines to face-to-face groups. Here are descriptions of some of the most popular types, and suggestions about how to find them.

Hotlines or Chats

Hotlines or chats can provide information, support, or link you with local/national services. Search online for hotlines or websites with a chat feature.

Professional help

Veterans with HIV can get referrals to mental health professionals, such as psychologists, social workers, substance use counselors. You will likely have a social worker who is part of the HIV clinic team where you receive care.

Finally, VA has Vet Centers that provide support in areas like post-traumatic stress disorder, military sexual trauma, and suicide prevention.

Self-help organizations

Self-help groups enable people to share experiences and pool their knowledge to help each other and themselves. They are run by members, not by professionals (though professionals are involved). You may, for example, be able to find groups specifically for women, people of color, gay men, transgender individuals, or other specific groups of people. These groups are typically volunteer, nonprofit organizations, with no fees (though sometimes there are small dues).

Work with your provider

It is so important to get medical care and start treatment as soon as you find out you have HIV. Please see a provider with experience treating people with HIV. Most VA providers who treat HIV are specialists in infectious disease. They work with a team of other health professionals who focus on HIV as a chronic, or lifelong, disease.

Treatments for HIV are not perfect (no medicine is), but are very tolerable and extremely effective for most people. They also work very well to minimize the chance that you may transmit HIV to sex partners (for pregnant women they also decrease the risk of infecting the baby). A health care provider can explain the best options for you.

Before appointments

Start a list or notebook of your questions or concerns so you don't forget anything. Prepare for your appointment with your provider by writing down:

  1. any questions that you have (see our resource questions to ask your provider).
  2. any symptoms or problems you want to tell your provider about (including things like poor sleep, trouble concentrating, feeling tired)
  3. a list of the medications, herbs, and vitamins that you are taking, including a list of any HIV medications you have taken in the past and any problems you had when taking them.
  4. upcoming tests or new information you've heard about
  5. changes in your living situation, such as a job change

You may want to ask a friend or family member to come with you and take notes.

During appointments

Go over your lab results, and keep track of them. If your provider wants you to have some medical tests, make sure you understand what the test is for and what your provider will do with the results. If you don't understand what your provider is saying, ask them to explain it in everyday terms.

If you feel your provider has forgotten something during the appointment, it is better to ask about it than to leave wondering about it. It's your right to ask questions of your provider. You also have a legal right to see your medical records.

Be open. Your provider isn't there to judge you, but to help make decisions based on your particular circumstances. Tell your provider about your sexual and drug use history. These behaviors can put you at risk of getting other sexually transmitted diseases. If your body is fighting off these other diseases, it will not be able to fight off HIV as effectively.

If you have sex with someone of the same sex or someone other than your spouse, it's OK to tell your provider. You cannot get kicked out of VA or lose your benefits if you have sex with someone of your same sex, or someone other than your spouse.

Monitor your health

Once you have been diagnosed with HIV, you need to pay close attention to your health.

You can keep track of your health in two ways. First, have regular lab tests done. Lab tests can often show signs of illness before you have any noticeable symptoms.

Second, listen to what your body is telling you, and be on the alert for signs that something isn't right. Note any change in your health--good or bad. And don't be afraid to call your provider.

Have regular lab tests

Your provider will use laboratory tests to check your health. Some of these tests will be done soon after you learn you have HIV.

The lab tests look at several things:

  • how well your immune system is functioning
  • how well your medications are controlling the HIV
  • certain basic body functions (tests look at your kidneys, liver, cholesterol, and blood cells)
  • whether you have other diseases that are associated with HIV

For your first few provider visits, be prepared to have a lot of blood drawn. Don't worry, you are not going to have so much blood drawn at every appointment.

For information on specific tests, go to the Understanding Laboratory Tests page in this section.

Be aware of possible complications

By weakening your immune system, HIV can leave you vulnerable to certain cancers and infections. These infections are called "opportunistic" because they take the opportunity to attack when your immune system is weak. But the good news is that taking your HIV medications can help prevent these infections.

HIV also is an inflammatory disease that affects many parts of the body, not just the immune system. That means that HIV can affect organs like the brain, kidneys, liver, and heart and may increase the risk of some cancers.

HIV medicines can sometimes have side effects. Sometimes these can raise the risk of heart disease or kidney disease. It is important that you let your providers know if you notice any concerning symptoms. For more information on opportunistic infections and other complications of HIV, see HIV-related conditions.

Know when to call your provider

You don't need to panic every time you have a headache or get a runny nose. But if a symptom is concerning you or is not going away, it is always best to have a provider check it out.

The following symptoms may or may not be serious, but don't wait until your next appointment before calling your provider if you are experiencing them.
Breathing problems:
  • persistent cough
  • wheezing or noisy breathing
  • sharp pain when breathing
  • difficulty catching your breath
Skin problems:
  • Appearance of brownish, purple or pink blotches on the skin
  • New or worsening rash--especially important if you are taking medication
Eye or vision problems:
  • blurring, wavy lines, sudden blind spots
  • eye pain
  • sensitivity to light
Aches and pains:
  • numbness, tingling, or pain in hands and feet
  • headache, especially when accompanied by a fever
  • stiffness in neck
  • severe or persistent cough
  • persistent cramps
  • pain in lower abdomen, often during sex (women in particular)
Other symptoms:
  • mental changes--confusion, disorientation, loss of memory or balance
  • appearance of swollen lymph nodes (glands), especially when larger on one side of the body
  • diarrhea--when severe, accompanied by fever, or lasting more than 3 days
  • weight loss
  • high or persistent fever
  • fatigue
  • frequent urination

Protect others

When you are living with HIV, it is important that you take measures so you don't pass the virus to sex partners, to injection drug partners, or (for women who wish to become pregnant) to a baby during pregnancy or delivery, or by breast-feeding. Starting and staying on HIV medications (antiretroviral therapy, or ART) is a hugely effective way to minimize the risk of transmitting the HIV virus. Using condoms and clean injection equipment also can prevent HIV from passing to other people. Condoms can also protect you from getting other sexually transmitted diseases. Partners who do not have HIV can use PrEP (pre-exposure prophylaxis), a daily pill that can prevent HIV infection. Learn more about PrEP.

Sometimes it can be difficult to explain that you have HIV to people you have had sex with or shared syringes with in the past. However, it is important that they know so they can get tested. If you need help telling people that you may have exposed them to HIV, many city or county health departments will tell them for you, without using your name. Ask your provider about this service.

Before telling your partner that you are living with HIV, take some time alone to think about how you want to bring up the subject.

  • Decide when and where would be the best time and place to have a conversation. Choose a time when you expect that you will both be comfortable, rested, and as relaxed as possible.
  • Think about how your partner may react to stressful situations. If there is a history of violence in your relationship, consider your safety first and make a plan with a case manager or counselor.

Start treatment

When or whether to start treatment for HIV is a decision that each person must make with their providers. In general, experts recommend starting HIV treatment very soon after your diagnosis; this can help prevent some of the damage that HIV causes in many parts of the body. HIV treatment (known as antiretroviral therapy, or ART) is strongly recommended for all people with HIV, and more urgently for anyone who has evidence of immune suppression (a CD4+ cell count that is below normal) or an AIDS diagnosis (an infection or cancer associated with HIV). It is also urgently recommended for anyone who has a sex partner who does not have HIV, and for women who may become pregnant.

For details, see Treatment Decisions.

Move forward with your life

Life does not end with a diagnosis of HIV. In fact, with proper treatment, people with HIV usually live long healthy lives. HIV can be a manageable chronic disease, like diabetes or heart disease. Taking care of your overall health can help you deal with HIV:

  • Take your medicines every day
  • Get regular medical and dental checkups
  • Eat a healthy diet
  • Exercise regularly
  • Avoid smoking and recreational drug use
  • Go easy on alcohol
  • Use condoms during sex (it can protect others from getting HIV, prevent unintended pregnancy, and protect you from other sexually transmitted diseases)

Just Diagnosed Resources

  • Questions to Ask Your Provider about Your HIV Diagnosis
    A list of questions to print out and bring to your medical appointment.
  • Just Diagnosed with HIV?Link will take you outside the VA website. VA is not responsible for the content of the linked site.
    The Body's starting place for people newly diagnosed with HIV. Articles on understanding HIV, first steps to treatment, telling others.
  • The CDC National HIV Hotline, including its Spanish Service and TTY Service:
    1-800-CDC-INFO (1-800-232-4636), 8 am - 8 pm ET, Monday through Friday.
  • More Information:
    • Find websites on more specific topics, such as opportunistic infections, travel health, and more.