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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

My Survivorship A to Z Guide

Day to Day Living Essential

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Note: This is a sample Survivorship A to Z Guide for a fictitious person we call John. John is just diagnosed with HIV. To view a summary of his answers which led to this Guide, click here.

To get your own free, computer-generated A to Z Guide, click here.

Think of your doctor(s), other professionals, family, friends and other helpers as a team, army or coalition. They don't need to be local. You're the leader or chief. Assign roles and tasks.

A diagnosis can make a person feel very alone -- no matter how recently or long ago the diagnosis. It's true that nobody can walk in your shoes. However, the odds are you are not alone.

Consider the people in your medical, professional and personal life as part of a group who are there to help in your battle. Think of the group in whatever terms work best for you. Perhaps it's:

  • A team over which you are the captain.
  • An army over which you are the Commander-in-Chief.
  • Your very own support group and you're the leader.
  • A partnership in which you are the leader.

Whatever you call the group, it's your job to coordinate the team to meet your needs. If you are not up to the job, ask a close family member or friend to help. Or take charge of a part of it, and ask for help with the other parts.

Take the time to think through your needs and decide who can help fill them. It may be easier if you put the list in writing. For example:

  • Medical
    • General: primary care doctor
    • HIV: specialist
    • Patient navigator
    • A patient advocate to go with me to important doctor appointments
    • Help getting to the doctor or treatment
    • Help filling prescriptions
  • Financial
    • Investment advisor
    • Accountant
    • Financial planner
  • Legal
    • Attorney to help with (or at least confirm) my will or trust, powers of attorney and advance healthcare directives
    • Tax attorney
    • Real estate attorney
  • Emotional support
    • Day-to-day support (including one-on-one support and support or self help groups)
    • Professional help coping
  • Practical
    • Local transportation
    • Help cleaning and/or maintaining the house
    • Grocery shopping
    • Meal preparation
    • Child care
    • Pet care

Make it the best team you can. As you choose your team, keep in mind that members don't have to be local. With telephones, the internet, Skype and overnight services, team members can be anywhere in the country (or even in the world). If "hands on" assistance is required, an expert in another geographic area can advise a local person what to do.

Set goals for each of the different members of your team.

  • Just because a person volunteers to do a particular thing for you doesn't mean you have to agree.
  • Likewise, if a person wants to spend a lot of time with you, it doesn't mean you have to spend more time with him or her than you want.
  • If a person wants to be your caretaker, but you don't want that person in that role, give him or her another job to do.

Create an alert on your calendar to review this list every few weeks in case your needs or team members change. 

Keep in mind that your children are also part of your team.

Let your children know your needs to the extent that they can understand them. For insight into how to speak with your children, see Telling Your Children About Your Diagnosis.

Consider redistributing tasks within your family unit for the time being to take account of your treatment and condition.

Understand that a diagnosis affects everyone around you, especially your spouse, caregivers and the people close to you. It's your decision whose needs are paramount at any given moment. [Tell me more]

It takes time for everyone to adjust.

  • Adjustment can be difficult. It can take time.
  • Adjustment is ongoing because the situation constantly shifts.

Being open with each other goes a long way to making sure each person's needs are met.

Take time with the people closest to you, particularly your spouse.

  • Talk with each other about the emotions each of you are feeling.
  • Share your fears.
  • Listen.
  • Be honest and open.
  • Work it through.
  • Be loving.