Hi All,Hoping you might be able to help me out. I'm the sibling of a CF child and I'm also a Neuro-Linguistic Programmer (psychology type stuff). My sister recently passed but I remember vividly my sister continuously saying "no one understands" and "I dont want to talk to 'hospital doctors or counsellors', they're full of crap". It seemed as though, even though she knew help was out of reach (her lung transplant didnt come in time), she just wanted someone to listen. Listen properly. So in order to a) help myself grieve and b) help others with CF and/or CF relatives and friends I thought I would target my NLP skills towards CF patients. I was hoping that maybe I could talk to some of you to get a personal insight into what it REALLY is like having CF and what, if anything, would help you deal with the issues that CF presents. Unfortunately, I didnt take the time while my sister was alive to make the most of understanding it, but that is my regret which I have to live with... and which I hope to make amends to some degree by being able to be there in some capacity for other CF's and their families.ThanksL
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In search of insight...
- Thread starter Laetitia
- Start date
Hey amanda,I am a CF patient, i was diagnosed at the age of 3 months. I am now 15 years old, i know what your sister meant by no one understands. For one, "normal" people dont know what its like to wake up every morning and look at yourself in the mirror and think <i>i have cystic fibrosis and there is nothing i can do to make it go away</i> its actually a really hard thing to do. When us CF'ers say no one understands, we dont mean it unthoughtfully or rudly, we just say it because its the plain out truth. I mean, for instance, when we dont take out digestive enzymes we get a pretty bad stomache ache... and people are like oh i know what you mean. no they dont. because we actually get worse stomache aches than anyone out there. so Its just a thing. But... we are very happy that people say they 'understand' because its just there version of saying they care. they just dont know how to form it out in words. I hope this helped you, then again i am only 15 and going through the rough stages of life... but if you need anymore help just AIM me at sexifiedlyss.Alyssa ;15f w/CF