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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.

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