Getting Involved in Your Well-Being
Part Two of Three in Project Inform's "After You've Tested Positive" Booklet
Getting into care can improve your quality of life even before you start treatment. This is because people with HIV often have other health issues that should be treated such as depression or high blood pressure. You and your doctor will need to assess your health and begin to plan for the future.
Many people develop a more assertive attitude about their well-being when they find out they have HIV. Making decisions about when and how to start HIV treatment isn't always easy. One positive step is to take part in your health care decisions. Another is communicating thoughtfully with your provider(s).
Some issues in your life may make it hard for you to see a doctor regularly, such as drug and/or alcohol use, unstable housing or lack of insurance or transportation. These can be addressed as you stay in care. Your doctor may be able to refer you to a case manager or social worker. (See "Lining Up Support.")
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AAHIVM Directory (see ReferralLink on right)
GLMA Directory (click FIND A PROVIDER at top)
HIVMA Directory (click FIND AN HIV PROVIDER at top)
- Understand that HIV treatment can be successful: newer drugs are generally easier to take and tolerate.
- Find HIV-experienced providers, such as dentists, OB-GYNs, etc.
- Keep up with medical appointments: people who miss them tend to do less well with their health.
- Get vaccinations, including annual flu shots.
- Be alert to symptoms and report them to your provider.
- Get other conditions under control through proper treatment, including diabetes, hepatitis, high blood pressure, etc.
- Consider disclosing your HIV status to those you trust.
- Find a social network that suits you. Share ideas with others.
- Improve your diet. Consider consulting a nutritionist or dietician.
- Take daily walks and exercise in ways that work for you.
- Find ways to reduce stress as much as you can.
- Get enough good sleep every night.
- Stop smoking.
- Take steps to reduce or stop drinking alcohol.
- Take steps to reduce or stop using street drugs.
- Get into a harm reduction or recovery program if needed.
- Ask questions of people you trust when you don't understand something.
- Ask for help -- there are many resources available.
Many people simply do what they're told when it comes to their health. So actively working with your doctor may be a new experience. It may feel odd at first, and some doctors are unfamiliar with patients asking lots of questions or questioning their advice. Either way, relationships take effort on both sides. If you decide that your provider isn't right for you, it may be possible to switch to someone else.
People who help make their own health care decisions tend to have better overall health. You may find having good relationships with other medical staff, like a nurse practitioner or physician's assistant, can help. Talking to a pharmacist is another resource. You may also be able to get second opinions from other doctors your friends or family see.
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The first few visits after your diagnosis are important ones for you and your doctor. They are the foundation for what you learn about HIV and how you and your doctor will work together to treat it.
The first visit can be an emotional time. Many doctors are sensitive and caring, and respond well to your needs. However, they have time constraints and are there to provide medical care, not necessarily emotional support. Friends, family, support groups, social workers and therapists can help with emotional support.
If possible, you may want to interview doctors before you decide who you want to see. Make sure you're comfortable with your provider and seek other help if the relationship isn't working for you, though this is not always possible.
- Your first visit should be longer, perhaps 30 minutes or more.
- Write questions down before your appointments to help you make the most of them.
- Ask a friend or advocate to go with you to make sure you ask the most important questions.
- Get your medical records transferred if you start seeing a new doctor.
It's important to get a full exam and medical history. Be open and honest about what you know about your health. Some conditions such as diabetes and hepatitis C can complicate treating HIV, so talking about them helps to ensure your health.
Below is a list of common tests your doctor should run to assess your health.
- Complete medical history, if new doctor
- Full physical exam
- Blood pressure
- Body temperature
- Two sets of CD4 cell counts and viral load tests, taken about 2 weeks apart
- Resistance test, if viral load is above 1,000
- Complete blood count
- Cholesterol measurements
- Blood sugar
- Anal Pap smear, if at risk for anal cancer
- Hepatitis B and C antibody tests
- STD screening and history
- Consider various vaccines, such as flu, hepatitis A and B or pneumococcal pneumonia
- Referrals to other providers like a dentist, case manager or social worker
- Pregnancy test
- Full GYN exam, with Pap smear, perhaps HPV test
Some health issues such as "street drug" abuse, alcohol abuse, domestic violence, mental health issues and homelessness can be very difficult to face on your own. Finding supportive people you trust can be an essential first step. Social services, support groups and supportive friends and family can be very helpful as you pursue bringing more health into your life.
Support groups for all types of issues (including HIV) can improve an individual's health. Being able to tell your story to people who understand can be very healing. They are rich with advice about how to deal with the issues you face. More support services are found near cities, but you can usually find case managers, social workers or peers who can help connect you with the right support no matter where you live.
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