Discussing Needs

Discussing IPF with Your Family

  • Start by telling your family that you have been diagnosed with IPF and that this is a serious condition
  • Let them ask questions at their own pace
  • Do not offer more information than is asked
  • If you are getting worse, talk with all members of your family openly and honestly (even children). Children may not understand medical details, but they can understand basic concepts
  • When loved ones see you getting sick, they tend to assume the worst. Sometimes telling them the truth can be a relief
  • Bringing your illness out in the open can give them the opportunity to give you love and support. If you don’t open the door to discussing your illness, your family may be afraid to talk about it

What Are Your Needs?

Many patients avoid asking for help and end up trying to do everything themselves. Many times, family members and friends are willing, but just do not know how to help. It is important that you recognize there may be things you need help with and communicate how you would like help.

  • Make a list of things you can do and still want to do on your own
  • Make a list of things you have difficulty doing and require assistance with
  • Have a conversation with your family to talk about both lists

What approach have you taken when sharing with your family?

It is also important that you discuss future possibilities, ask yourself:

  • Who will make health care decisions for you if you cannot?
  • The kind of medical treatment you want / do not want?
  • How comfortable would you like to be?
  • How you want people to treat you?
  • Have you discussed a Do Not Resuscitate order (DNR)
  • What do you want your loved ones to know?