Newly Diagnosed With HIV

"Overwhelming" is a word commonly used to describe a new diagnosis of HIV disease. There are so many things to consider. So much to learn. So many questions. So much uncertainty. So much baggage that comes with a disease that is generally associated with unsafe sex or drug use.

Experience has shown that the best way to proceed is to break things into steps. Then deal with them one at a time in the order that works for you. (Survivorship A to Z provides a Prioritizer to help you set and keep track of your priorities.)

Following are steps to consider. with links to additional information.

• Processing your diagnosis
  • Take time to breathe. You are a person living with HIV - not one dying of it. Whatever happened, happened. There is no use dwelling on how you became infected..
    • If you only had one test which was positive, consider asking for another test from a different lab.  False positives are rare, but they do happen.
  • Commit yourself to doing everything you can to keep the virus in check. Given the emotions that generally appear with a diagnosis, it is preferable to avoid making major decisions for a few months. 
• Medical and health related
  • 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.
  • Learn what you need to know about HIV.
    • 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. For instance, one way is to comply with treatment. In some states, you may be criminally liable for transmitting the virus.
  • Decide with input from an HIV specialist whether to start treatment now. If the decision is to start treatment, 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 such as massage therapy should only be complementary to western medical treatments, not instead of them.
  • 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.
  • Think of family and friends as part of your health care team. Ask for help when you need it.
• Disclosure
  • Decide who to tell about your HIV status, and when. Your answers may be different for family and friends, children and work. Be prepared for differing responses.  
• Finances and Insurance
  • 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 insurance, 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.with the thought that you're going to die soon. With today's meds, the odds are you won't.
• Work:
  • If you work, consider who to tell or not, learn about your legal rights and benefits and how to negotiate an accommodation such as time off or a job that is easier on your body. Look for an advisor to help understand your employer's culture and the best way to negotiate it. 
  • If you are unable to work because of your health condition, learn the best way to apply for Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI).
• Legal matters
  • Start getting your legal affairs in order - not because you're going to die from HIV but to use the diagnosis as a trigger to action. Taking care of these matters will help you feel in control and help keep you busy.
• Learn about the HIV resources available to you.
• Pets
  • If you have a pet, learn what you need to know to keep both of you healthy.
  • If you do not have a pet, consider getting one.  They are proven to be good for health.
• Emotions
  • Share your emotions. Seek someone who is going through the same thing you are. Consider joining a support group.
  • Watch for depression and other emotional side effects.. Depression and all emotional other side effects such as anxiety and fear can be treated.

NOTE: Information can help you feel in control. On the other hand, getting ahead of yourself can be overwhelming. When you are no longer newly diagnosed, we suggest reading: Living With HIV.

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