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Health: Getting Involved in Your Well-Being

Part Two of Three in Project Inform's "After You've Tested Positive" Booklet

January 2013

Getting Into Care as Soon as Possible

Getting into care can improve your quality of life even before you start treatment. This is because people with HIV often have other health problems (such as depression or high blood pressure) that should be treated. 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. Because HIV treatment can be complicated, making decisions about when, how and whether to start isn't always easy. One positive step is to play a 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 and other resources. These issues can be addressed as you establish your HIV care. Your doctor may be able to refer you to a case manager or social worker. (See "Lining Up Support.")

Main Points to Remember

  • Find a doctor soon to assess your current health needs.
  • Many support services can help with issues such as housing, lack of insurance or domestic violence.
  • Participating in your health care decisions can help you make the most out of living well with HIV.

Helpful Resources

AAHIVM Directory (see ReferralLink on right)
GLMA Directory (click FIND A PROVIDER at top)
HIVMA Directory (click FIND AN HIV PROVIDER at top)

Developing a Relationship With Your Doctor(s)


Developing a Relationship With Your Doctor(s)

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 ends. If you decide that your provider isn't right for you, it's sometimes possible to switch to someone else.

People who take a more active role in making their own health care decisions tend to have better overall health. You may find that developing a closer relationship with other staff in your doctor's office, like a nurse practitioner (NP) or physician's assistant (PA), 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.

Main Points to Remember

  • Developing a partnership with your doctor may take some time and practice.
  • Participating in decisions around your HIV care can lead you to have better overall health.

Helpful Resource

Patient/Doctor Relationship


Your First Few Doctor Visits

Your First Few Doctor Visits

The first few visits after your diagnosis are important 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.

Your first visit to a doctor after your diagnosis 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 make a final decision on who you want to see. You have the right to make sure you're comfortable with your provider and to seek other help if the relationship isn't working for you, though this is not always possible.

  • Write questions down before your appointments to help you make the most of your visits.
  • Consider finding a friend or an advocate to go with you to make sure you remember to ask the most important questions and that they get answered.
  • 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 knowing about them early and talking about them helps to ensure your health.

Below is a list of common tests your doctor should run to assess your health.

health care professional and patient
  • Complete medical history, if this is a new doctor
  • Full physical exam
  • Blood pressure
  • Body temperature
  • Two 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
  • Pregnancy test
  • Full GYN exam, with Pap smear, perhaps HPV test
  • Anal Pap smear, if at risk for anal cancer
  • Hepatitis B and C antibody tests
  • Sexual infection screening and history
  • Consider various vaccines, such as flu, hepatitis A and B or pneumococcal pneumonia
  • Referral for an oral exam by a dentist


Think About Your General Health

Many people find that as they adjust to living with HIV their diagnosis can motivate them to seek help and taking charge of many aspects of their lives. Take the time to explore ways to improve your health. Some of these are found on page 15.

For example, stopping smoking can greatly reduce health risks within the first year or two of quitting. Some foods (those high in sugar and saturated fats) can contribute to conditions like diabetes and heart disease. Stress causes chemicals to release in the body that affect the immune system. Engaging in safer sex prevents you from getting sexual infections, and helps prevent transmission of HIV to your partner(s).

Depression is common among people with HIV. Recognizing and properly treating it can help you make better health decisions. Excessive alcohol and drugs can harm the liver and other organs, and make it harder to take your HIV meds regularly. Certain techniques such as stress reduction can improve health.

Main Points to Remember

  • Take time to explore ways to improve your health.
  • Consider some of the suggestions on page 15, or come up with your own.

Helpful Resources

Maintain Your General Health
Nutrition & Diet Tips


Ways to Improve Your Health

  • 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 doctor appointments: people who miss appointments tend to do less well with their health.
  • Get vaccinations, including annual flu shots.
  • Be alert to symptoms and report them to your doctor.
  • Screen and treat OIs and other conditions appropriately.
  • 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.


Consider Other Issues in Your Life

Consider Other Issues in Your Life

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 and such groups are rich with advice about how to deal with the issues you face. Although more AIDS service organizations are found near cities, no matter where you live you can usually find case managers, social workers or peers who can help connect you with local services that can help you with the issues you face.

Main Points to Remember

  • Dealing with HIV may give you the opportunity to change other aspects of your life.
  • Many social services are available that can support you making changes.
  • Finding and talking to people who understand your situation can be healing and empowering.


Related Stories

"After You've Tested Positive": Table of Contents
Knowledge: Getting Informed About HIV
Self-Advocacy: Learning to Support Yourself



This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
 

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