Dana's Writings

Do's and Dont's for dealing with someone with Cystic Fibrosis (unknown source)

Don'ts

  • Don't assume because I look well that I feel well.  Looks can be deceiving.  Many days I look great but I feel terrible.
  • Don't tell me you know how I feel.  No one knows how anyone feels.  Two people with the same disease may feel totally different.  We all have varying thresholds of pain, and pain cannot be measured. 
  • Don't tell me about your great-aunt Gertrude and her CF, and how well she managed in spite of it.  I am not  Aunt Gertrude, and I am doing my best. 
  • Don't tell me, "It could be worse." Yes, it could be but I don't need to be reminded.
  • Don't Decide what I am capable of doing.  CF doesn't affect the brain.  Allow me to decide what activities I can participate in.  There may be times I make the wrong decision, and if I do, I'll know it soon enough. 
  • Don't be upset that you cannot ease my pain.  It won't do any good for both of us to feel miserable. 
  • Don't ask me how I feel unless you really want to know.  You may hear a lot more than you are prepared to listen to. 
  • Don't assume because I did a certain activity yesterday that I could do it today.  Cystic Fibrosis is ever changing. 
  • Don't tell me about the latest fad "cure" I want to be cured more then anything, and if there is a legitimate cure out there, my doctor will let me know. 

DO's

  • Do learn everything you can about the disease.  The more you know, the better equipped you will be to know what to expect. 
  • Do realize that I am angry and frustrated at the disease, not with you.
  • Do let me know when you are available to help when I ask.  I'll be grateful.
  • Do offer me lots of hugs and encouragement. 
  • Do understand why I cancel plans at the last minute.  I never know from one day to the next how I will feel.  CF is like that.
  • Do continue to invite me to all the activities.  Just because I might not be able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail.  Please let me decide.  Thank you.