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.
There are some things that you should know about HIV that may ease some of the stress or confusion you are feeling.
Testing positive for HIV is a serious matter. This guide will take you through the steps you need to take to protect your health.
| Understand your diagnosis|
When your medical provider tells you that you are HIV positive, it means that you have been infected with the virus. However, the HIV test does not tell you if you have AIDS or 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 condition, and the condition of your immune system. For descriptions of these tests, go to Understanding Laboratory Tests.
| Learn about HIV and AIDS|
The more you know about HIV and how to treat it, the less confused and anxious you will be about your diagnosis. The more you learn, the better you will be at making decisions about your health.
There are many ways to learn about HIV and AIDS:
- Start with the Basics section of this site and read through all the sections.
- Read information. 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 and AIDS issues. You can find a list of them on the Resources page at the end of this section.
- Use your local library: The most current information will be in the library's collection of newspapers and magazines (books about HIV and AIDS may be out of date by the time they are published).
| Join a support group|
Joining a group of people who are facing the same challenges you are facing can have important benefits. These include feeling better about yourself, finding a new life focus, 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 being HIV positive.
Support groups are especially helpful if you live alone or don't have family and friends nearby.
There are different types of support groups, from hotlines to face-to-face encounter groups. Here are descriptions of some of the most popular types, and suggestions about how to find them.
Find a hotline in your area by talking to a social worker or other health care professional. Or look in the telephone book, in the yellow pages under "Social Service Organizations." Ask the hotline to "match" you with another person with a history like yours. He or she can give you practical advice and emotional support over the telephone.
| Professional Help|
Ask your provider for referrals to mental health professionals, such as psychologists, nurse therapists, clinical social workers, or psychiatrists. You also will likely have a social worker who is part of the HIV clinic where you will receive care. You can also get help for drug or alcohol abuse as well as counseling for depression and other mental health issues, if these are problematic.
| 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). Because members face similar challenges, they feel an instant sense of community. These groups are volunteer, nonprofit organizations, with no fees (though sometimes there are small dues).
| Work with your provider|
HIV is the virus that causes AIDS. If left untreated, it can lead to illness and death. This is why it is so important to get medical care if you find out you have HIV. Do not be afraid to seek a doctor with experience in treating HIV-infected patients--he or she can help you to stay well.
Treatments for HIV are not perfect, but can be very effective for many people. A doctor or other health care provider can explain the best options for you.
If you work with your health care provider in planning your care, you can deal with the disease in a way that is best for you.
| Finding a provider|
Many people chose to see a provider who specializes in HIV infection, particularly in the beginning or if there are complications of HIV infection. There are many HIV clinics and providers who provide care at low or no cost, if you do not have health insurance, so don't let a lack of health insurance or lack of money stop you from getting care. If you have been diagnosed with HIV and don't know how to get connected with HIV care, there are a number of resources:
| Before appointments|
Start with a list or notebook. Prepare for your appointment with your doctor by writing down:
- Any questions that you have (print out questions to ask your doctor and take it to your appointment)
- Any symptoms or problems you want to tell the doctor about (include symptoms such as poor sleep, trouble concentrating, feeling tired)
- A list of the medications that you are taking (include herbs and vitamins). Also bring a list of any HIV medications you have taken in the past and HIV-related problems you have had with them.
- Upcoming tests or new information you've heard about
- Changes in your living situation, such as a job change
That way you won't forget anything during the appointment.
You may want to ask a friend or family member to come with you and take notes. It can be difficult for you to take notes and pay attention to what your doctor is saying at the same time.
| During appointments|
Go over your lab work, and keep track of your results. If your doctor wants you to have some medical tests, make sure you understand what the test is for and what your doctor will do with the results. If you don't understand what your doctor is saying, ask the doctor to explain it in everyday terms.
If you feel your doctor has forgotten something during the appointment, it is better to ask about it than to leave wondering whether something was supposed to happen that didn't. It's your right to ask questions of your doctor. You also have a legal right to see your medical records. After all, it's your body.
Be honest. Your doctor isn't there to judge you, but to make decisions based on your particular circumstances. Tell your doctor about your sexual or drug use history. These behaviors can put you at risk of getting other sexually transmitted diseases as well as hepatitis. If your body is fighting off these other diseases, it will not be able to fight off HIV as effectively. You may get sicker, faster.
| Monitor your health|
Once you have been diagnosed with HIV, you need to pay closer attention to your health than you did before.
You can keep track of your immune system in two ways. First, have regular lab tests done. Lab tests often can 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 a doctor.
| 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 you when your immune system is weak.
In addition, HIV is recognized to be 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.
Certain changes can happen to HIV-positive people who are living longer and taking HIV medicines. Some people have experienced visible changes in body shape and appearance. Sometimes these changes can raise the risk of heart disease and diabetes.
| Know when to call a medical 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 even if it doesn't feel like a big deal. The earlier you see a doctor when you have unusual symptoms, the better off you are likely to be.
The following symptoms may or may not be serious, but don't wait until your next appointment before calling a provider if you are experiencing them.
wheezing or noisy breathing
sharp pain when breathing
difficulty catching your breath
Appearance of brownish, purple or pink blotches on the skin
Onset of rash--especially important if you are taking medication
Eye or vision problems:
blurring, wavy lines, sudden blind spots
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
pain in lower abdomen, often during sex (women in particular)
mental changes--confusion, disorientation, loss of memory or balance
appearance of swollen lymph nodes, especially when larger on one side of the body
diarrhea--when severe, accompanied by fever, or lasting more than 3 days
high or persistent fever
| Protect others|
Once you have HIV, you can give the virus to others by having unprotected sex or by sharing needles (or, if you are pregnant and not on HIV medications, you can pass HIV to the baby during pregnancy, delivery or by breast-feeding). This is true even if you are feeling perfectly fine. Using condoms and clean needles can prevent infecting other people. It can also protect you from getting other sexually transmitted diseases. Taking HIV medications that suppress HIV also greatly reduces the likelihood of transmitting HIV infection to another person.
Sometimes it can be difficult to explain that you have HIV to people you have had sex with or shared needles with in the past. However, it is important that they know so that they can decide whether to 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.