Content Overview 
- Summary
- Be a person living with HIV - not one dying of it.
- Commit yourself to doing everything you can to keep the virus in check.
- Look for a doctor who is a specialist with a large HIV practice who is connected with a quality hospital. Learn how to maximize your time with doctors.
- HIV. Basics
- If lab or other tests are unexpectedly bad or good, ask for them to be done again - preferably by a different lab.
- Decide whether to start treatment. If so, choose a treatment that fits your life.
- Once you choose a treatment, follow the prescribed regimen. Learn to be wise about purchasing, living with, storing and disposing of drugs. Free drugs may be available.
- Non-Western treatments should be complementary, not instead of Western treatments. If needed, cutting edge treatments are available through clinical trials.
- Decide who to tell about your HIV status, and when.
- Tell every doctor and other medical professional about your HIV status and drugs.
- Think of family and friends as part of your health care team. Ask for help when you need it. Family roles may change as your needs change.
- Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.
- Examine your insurance and financial situation to determine how to pay for medical care and drugs or access them for free if you don't have the resources. If you don't have health insurance, do what you can to get it. You still can.
- Pay attention to your financial basics. Start improving your financial resources. Do what you can to get rid of or minimize existing debt. Refine your investment strategy. Keep track of medical expenses.
- When debt is under control, start working on your goals.
- If you work: Learn how to navigate the potential mine field.
- If you are not able to work, learn the best way to apply for disability income benefits. If you receive a disability benefit, learn how to keep it.
- If you are returning to work or changing jobs, a new employer cannot ask about your health condition.
- Self employed and business owners
- Be sure your legal affairs are in order, including Advance Care Directives. HIV only makes this need more urgent. It will help you feel in control.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Live a healthy lifestyle. It helps make drugs and other treatments most effective.
- If you have a pet, learn how to live with it safely. If you don't have a pet, consider getting one. A pet is good for your health.
- Although a major source of transmission of HIV is through bodily contact, you can still be physically intimate with people. Learn how to avoid transmitting HIV to other people.
- Watch for depression. Depression, and all other side effects, can be treated.
- Learn About Other Diseases That Can Show Up When Living With HIV, How To Help Prevent Them And Symptoms To Watch For.
Living With HIV
Think of family and friends as part of your health care team. Ask for help when you need it. Family roles may change as your needs change.
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Your team
Think about the appropriate people around you as part of your team, just as doctors and other professionals are part of your team. Each member can provide his or her knowledge, advice, and support.
Who is actually involved with you and your health care, and to what degree, is up to you. You don't have to accept help just because it is offered.
Likewise, you can set limits on peoples' participation in your experience. For example, only spend time with people who have a positive outlook and are supportive.
Expect that people will let you know when they hear stories about other people with HIV or about various treatments. This information can be overwhelming and not helpful. Feel free to let people know what you do or do not want them to pass on to you. Check any information you learn with your doctor.
Ask for the help you need
Don't wait to ask for help until the burden gets too great or you reach a breaking point. You don't need to be Superman or Wonder Woman and try to deal with everything you did before as well as everything that comes along with a diagnosis.
There may be times when you will need help either doing everyday tasks such as grocery shopping or child care, or matters directly related to your health such as bathing, accompanying you to doctor appointments, or acting as a patient advocate if you enter a hospital.
Make a list of your chores and responsibilities that you can't handle right now. Divide them up among your team.
If you have many needs, consider appointing a family member or friend to coordinate your support team for you. It takes away the burden. It is also helpful to team members because they can more easily say "no" when they need to.
If you need Medicaid (Medi-cal in California) and have too many assets, consider entering into a caregiver contract with a family member or friend. Such a contract is a legal way of reducing your assets. We have an article concerning Caregiver Contracts. (We also have an article about how to qualify for Medicaid).
Ask someone to go with you to important meetings with your doctor
It is helpful to have a family member or friend attend all important meetings with doctors. Such a person can help in a batch of ways, including to help ask questions, help recall what was said, and to help relieve anxiety. We refer to such a person as a Patient Advocate.
We also recommend that you take a digital or tape recorder to every session. You will learn about similar tips in our content about maximizing your time with a doctor.
Think about their needs as well as your own.
A diagnosis affects everyone around you. Your needs come first, but theirs should not be ignored.
Just as you need to share your emotions, they should share theirs with one another and with you. Talking keeps mole hill size difficulties from erupting in to mountain size problems.
Once symptoms appear, family roles likely shift as your needs change. It can take time to adjust to changes or work through a new one that works for all members.
Relax family rules to fit the situation
For example, meals could be eaten on paper plates with throw away plastic utensils when you are not feeling well. Chores that don't need to be done right away can be postponed.
Non-medical professionals in your life
Tell your insurance broker, lawyer, accountant and other non-medical professionals in your life about your diagnosis. They may have suggestions about how it affects specific situations you face and how to best deal with them.
- Insurance brokers
- Lawyers
- Team