JennifersHope
New member
I would never and I mean never say this because it isn't in me to say.. but if I could,
I would say, I feel like I have cystic fibrosis, how do you feel? I wouldn't want to come across like a smart mouth.. but that is what I want to say sometimes..
Usually though I am so happy that people care enough about me to ask, and let me tell you, it is hard on the other person to know what to say to us, I think it is awkward... I know I have a close family member who suffers horrible migraines and I never know what to ask or say.....I dont' want to bring it up if she is trying to forget I don't want to not ask so she knows I care... It is hard
Now when someone gives you the mornonic response of you look good.. and believe me, I get that all the time and I usually do look good, I have a lot of weight on me, etc... I don't know how to respond... I know they mean well but I instantly get my feathers ruffled and I want to tell them SCREW YOU.....I want to lift my shirt and show them my scar from the top of my breast to my hips, I want to show them my port, I want to cough in their face and show them what the inside of my lungs look like..
But really I don't.. because people really don't know how to handle a chronically ill person, and people don't understand our disease... and really, we probably wouldn't understand it either if we were not affected by it.. I wish I didn't know crap about CF..
It is really hard for me to be mad at someone because I love people so much even ones who don't get it....for some reason I always feel bad for them, they just don't know, and if it bothers me I should tell people.. sometimes I smile and say Thank you..
Like I did today when someone saw me rubbing my stomache because it hurt and they said Congratulations.... Can someone say budda belly?? I just couldn't tell them I was not pregnant so I said thank you and smiled
OKay.. that was no help.. Go with SCREW YOU and Spit on them.. Just kidding..
I would say, I feel like I have cystic fibrosis, how do you feel? I wouldn't want to come across like a smart mouth.. but that is what I want to say sometimes..
Usually though I am so happy that people care enough about me to ask, and let me tell you, it is hard on the other person to know what to say to us, I think it is awkward... I know I have a close family member who suffers horrible migraines and I never know what to ask or say.....I dont' want to bring it up if she is trying to forget I don't want to not ask so she knows I care... It is hard
Now when someone gives you the mornonic response of you look good.. and believe me, I get that all the time and I usually do look good, I have a lot of weight on me, etc... I don't know how to respond... I know they mean well but I instantly get my feathers ruffled and I want to tell them SCREW YOU.....I want to lift my shirt and show them my scar from the top of my breast to my hips, I want to show them my port, I want to cough in their face and show them what the inside of my lungs look like..
But really I don't.. because people really don't know how to handle a chronically ill person, and people don't understand our disease... and really, we probably wouldn't understand it either if we were not affected by it.. I wish I didn't know crap about CF..
It is really hard for me to be mad at someone because I love people so much even ones who don't get it....for some reason I always feel bad for them, they just don't know, and if it bothers me I should tell people.. sometimes I smile and say Thank you..
Like I did today when someone saw me rubbing my stomache because it hurt and they said Congratulations.... Can someone say budda belly?? I just couldn't tell them I was not pregnant so I said thank you and smiled
OKay.. that was no help.. Go with SCREW YOU and Spit on them.. Just kidding..