Content Overview 
- Overview
- Take time to breathe. You are a person living with HIV - not a person dying of it. Whatever happened, happened. There is no use dwelling on it.
- HIV Basics
- Commit yourself to doing everything you can to keep the virus in check. Don't make any major decisions that you don't have to make right now.
- Look for a doctor with a large HIV practice who is connected with a quality hospital, in a different locale if necessary. Learn how to maximize your time with doctors.
- Decide whether to start treatment. If so, choose a treatment that fits your life. If you have any question about which treatment to take, get a second opinion.
- 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. Cutting edge treatments are available if needed through clinical trials.
- Decide who to tell about your HIV status, and when. Your answers may be different for family and friends, children and work. If not before, tell your children about your diagnosis if you have symptoms.
- Think of family and friends as part of your health care team. Ask for help when you need it.
- Share your emotions. Seek someone to talk with who is going through the same thing you are. Consider joining a support group.
- Start examining 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 coverage, get it. You still can.
- Pay attention to your financial basics such as paying your rent on mortgage on time. Keep track of medical expenses. They may be deductible.
- Don't go on a spending spree.
- If you work, learn about your legal rights and benefits, consider who to tell or not, negotiate an accommodation if you need one. Look for an advisor. If you are unable to work, learn how to apply for SSDI/SSI.
- Start getting your legal affairs in order - not because you're going to die from HIV but because the diagnosis can be a trigger to action. It will help you feel in control and help keep you busy.
- Learn about the HIV resources in your community.
- Drugs do not work in a vacuum. Start to think of the food you eat, the exercise you get, rest/sleep and even proper care of your mouth as steps you can take to make drugs and treatments most effective.
- 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.
- If you have a pet, learn what you need to know to keep both of you healthy.
- Watch for mental conditions that affect your life. Depression, anxiety and other emotional side effects, can be treated.
Newly Diagnosed With HIV
Think of family and friends as part of your health care team. Ask for help when you need it.
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Your team
Start thinking 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 are positive and 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 do 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 your diagnosis 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, 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
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 keep talking with one another. Talking keeps mole hill size difficulties from erupting in to mountain size problems.
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.
For additional information, see: