Activity

In reading Elanor’s comments about telling others about the disease I thought about my own experience. I tend to be direct and open with my feelings, so here’s what I’ve done:
— In my first visit with the pulmonary rehab therapist I was given a one-page sheet listing about twelve basic facts about IPF. For example, one of them said, “I may look healthy, but my disease is present and will progress.” Another one says, “I am vulnerable to serious consequences if I get get a cold or flu. If you are sick, let’s postpone our visits until you are well.” The list was prepared for family and friends as a tool in helping them understand my situation and the disease of IPF.
— The other things I do is after each three-month visit to my pulmonologist I send a short, one-paragraph email to my family members and close friends. It keeps them informed, gives opportunities for them to give me support, and relieves the burden of asking awkward questions about my disease. They are all curious and care. The email fills that void. We’re all in the know!