Put me in that "but you don't LOOK sick" group. Yes, I even got that from the doctors/respiratory techs too....I guess that was their psychological-pep-babble way of saying "you could be worse"
It is the way our society works - they have to see the pain to empathize and have compassion... the media has learned to "guilt" people into donations for their cause using this method.
The truth is, you don't have to look pathetic to be seriously ill.
Don't take it personally. All you can do is try to educate them. If they don't believe you now...hopefully someday in the future, when their brain expands, they will understand the realities of what it is to "be sick"
Edit to say: like grassisgreener below, people who have heard of CF have preconceived notions:
1) They die as children
2) IF they make it past 18, they are "rare" and "lucky"
3) IF they make it past 20, they "are a miracle" or, have a "mild case"
4) If we are "sick" it's because of something we aren't doing/not following dr's orders.
5) and, Lung Transplant is the answer for everything/ will "cure" CF.
When the truth is:
1) Many still die young, but due to research and development in science, we are living healthier, longer.
2) I'm not "lucky" because I haven't yet died from CF, CF is a <u>daily</u> management routine that needs to be followed. I'm not "lucky" because I can eat as much as I want. I'm not "lucky" because I am "retired"
3) There is no such thing as a mild case, CF is progressive by nature, not by choice. We just do our best to maintain the lung status we have.
3) We can follow doctors orders to the T, religiously, and yet there is still the possibility we will get sick, and get sicker.
4) Lung transplant is only a "last resort"...not a "quick fix".
Any other misconceptions that I have missed??
It is the way our society works - they have to see the pain to empathize and have compassion... the media has learned to "guilt" people into donations for their cause using this method.
The truth is, you don't have to look pathetic to be seriously ill.
Don't take it personally. All you can do is try to educate them. If they don't believe you now...hopefully someday in the future, when their brain expands, they will understand the realities of what it is to "be sick"
Edit to say: like grassisgreener below, people who have heard of CF have preconceived notions:
1) They die as children
2) IF they make it past 18, they are "rare" and "lucky"
3) IF they make it past 20, they "are a miracle" or, have a "mild case"
4) If we are "sick" it's because of something we aren't doing/not following dr's orders.
5) and, Lung Transplant is the answer for everything/ will "cure" CF.
When the truth is:
1) Many still die young, but due to research and development in science, we are living healthier, longer.
2) I'm not "lucky" because I haven't yet died from CF, CF is a <u>daily</u> management routine that needs to be followed. I'm not "lucky" because I can eat as much as I want. I'm not "lucky" because I am "retired"
3) There is no such thing as a mild case, CF is progressive by nature, not by choice. We just do our best to maintain the lung status we have.
3) We can follow doctors orders to the T, religiously, and yet there is still the possibility we will get sick, and get sicker.
4) Lung transplant is only a "last resort"...not a "quick fix".
Any other misconceptions that I have missed??