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.