What is the best way for a non-CFer to react to you and/or CF?

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thekidsarealright

New member
I don't have CF, but I have a daughter and a cousin with CF. I have read much about what offends/annoys CFers concerning others that do not have it and don't understand it. Seems to be a lot! So, here's my question to help those w/o CF know how to talk to and respond to someone that has it: How would you prefer non-CFers to respond to CF? Has anyone said/done something to make you feel that they really cared about you AND the fact that you or a loved one has CF?
 
T

thekidsarealright

New member
I don't have CF, but I have a daughter and a cousin with CF. I have read much about what offends/annoys CFers concerning others that do not have it and don't understand it. Seems to be a lot! So, here's my question to help those w/o CF know how to talk to and respond to someone that has it: How would you prefer non-CFers to respond to CF? Has anyone said/done something to make you feel that they really cared about you AND the fact that you or a loved one has CF?
 
P

Printer

Active member
We as a group are very oversensitive. If someone told you that you look good, you would say thank you. We, somehow, take offence. Personally, I only become agravated when talking to (ignorant) Doctors, or other medical professionals, who should know better. For example, I've been asked by a Doctor, "How long have you had CF". No joke, I've been asked that more than a few times.

We want the world to understand and accept our coughing in public but God help anyone who coughs near us or near our kids. We think that we have a right to cough near other people because CF is not contagious. All of us, like everyone else, spreads non CF germs when we cough.

I would say relax and ignore us.

Bill
 
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Printer

Active member
We as a group are very oversensitive. If someone told you that you look good, you would say thank you. We, somehow, take offence. Personally, I only become agravated when talking to (ignorant) Doctors, or other medical professionals, who should know better. For example, I've been asked by a Doctor, "How long have you had CF". No joke, I've been asked that more than a few times.

We want the world to understand and accept our coughing in public but God help anyone who coughs near us or near our kids. We think that we have a right to cough near other people because CF is not contagious. All of us, like everyone else, spreads non CF germs when we cough.

I would say relax and ignore us.

Bill
 
S

scarecrow

New member
Ditto. I often tell my wife that I feel like such a hipocrit because if I hear or see anybody coughing I will try to stay away form them as much as possible.
 
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scarecrow

New member
Ditto. I often tell my wife that I feel like such a hipocrit because if I hear or see anybody coughing I will try to stay away form them as much as possible.
 
A

Aboveallislove

Super Moderator
I totally agree re the coughing! And I get a good laugh out of most of the things said (i.e., sister-in-law on hearing son's diagnosis "well you need to expose him to stuff and build up his immunity). But some things hurt. And I'm sure the same-old-same-old day-in-day out for CFers must grate. . . so I agree it would be nice to know what helps or is the "right" thing to say. If you asked me as a CF mom, I could rattle off the things over the last 3 years that people have said that have helped/melted my heart from kindness and made it a little easier. I wish I knew as well what they would be for those walking in your lungs. . . so please share.
 
A

Aboveallislove

Super Moderator
I totally agree re the coughing! And I get a good laugh out of most of the things said (i.e., sister-in-law on hearing son's diagnosis "well you need to expose him to stuff and build up his immunity). But some things hurt. And I'm sure the same-old-same-old day-in-day out for CFers must grate. . . so I agree it would be nice to know what helps or is the "right" thing to say. If you asked me as a CF mom, I could rattle off the things over the last 3 years that people have said that have helped/melted my heart from kindness and made it a little easier. I wish I knew as well what they would be for those walking in your lungs. . . so please share.
 
P

Printer

Active member
We need to remember that 30,000 people in the US have CF. Given the total population, 30,000 is pretty miniscule. Other than through here and attending CF events, I have NEVER met anyone who has CF. That begs the question, If I didn't have CF, how much would I know about it? Answer. NOTHING. Given that answer, how much can I expect from ANYONE ELSE. Hell when I'm coughing, even my wife will ask, "do you want a glass of water". Like water would help.

We are an extremely minority in this world. As such we can not expect the world to adjust to us. We have to be those who adjust to the population. People will always say things based upon ignorance of CF. It is up to us to accept there lack of knowledge and not be offended. Until we build schools exclusively for kids with CF or until we can exclude people without CF (who could be offended by our coughing or worse those who cough) from attending movies with us, we must accept the world as it is.
 
P

Printer

Active member
We need to remember that 30,000 people in the US have CF. Given the total population, 30,000 is pretty miniscule. Other than through here and attending CF events, I have NEVER met anyone who has CF. That begs the question, If I didn't have CF, how much would I know about it? Answer. NOTHING. Given that answer, how much can I expect from ANYONE ELSE. Hell when I'm coughing, even my wife will ask, "do you want a glass of water". Like water would help.

We are an extremely minority in this world. As such we can not expect the world to adjust to us. We have to be those who adjust to the population. People will always say things based upon ignorance of CF. It is up to us to accept there lack of knowledge and not be offended. Until we build schools exclusively for kids with CF or until we can exclude people without CF (who could be offended by our coughing or worse those who cough) from attending movies with us, we must accept the world as it is.
 
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thekidsarealright

New member
I remember when I had my little girl at the ped's office for a one month check-up. She was hungry and we had been waiting forever. I got her enzymes out, put them into her applesauce, and proceeded to feed them to her before I gave her a bottle. A woman sitting next to me told me (after she had SEEN me put her med's in it) that she just didn't understand why parents try to feed their children whole foods at such early ages. I was livid to say the least. I didn't say anything to her, I just smiled, but when I got home I cried and cried. My husband was mad and told me that I should have told her off or to mind her own business. In that lady's eyes, I was doing my child an injustice by feeding her a food that her body was not ready for. I couldn't fault her for her comment. I would have liked it better if she would have asked why before she judged me, though.
Bill is right. CF is just not prevalent enough for the rest of the world to understand and it is a very complex thing. I don't like it when I explain it and people say "She'll grow out of it and she'll be fine", but that is an opportunity to educate others IF they're receptive. In many cases they are not, so I just (again) smile and go on about my business. I have received encouraging words, also, but they're hard to come by since negative words seem to stick longer and with more intensity than positive words do. My favorite is "Look at how beautiful she is and how vibrant her personality! That kid has the best of the best going for her and nothing will hold her down". When I get wrapped up in the fact that she has CF, kind words about her and her awesomeness brings me out of it. She has CF, but she's NOT CF.
My thing is ASK before you judge and please listen before you spout off "She'll grow out of it".
 
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thekidsarealright

New member
I remember when I had my little girl at the ped's office for a one month check-up. She was hungry and we had been waiting forever. I got her enzymes out, put them into her applesauce, and proceeded to feed them to her before I gave her a bottle. A woman sitting next to me told me (after she had SEEN me put her med's in it) that she just didn't understand why parents try to feed their children whole foods at such early ages. I was livid to say the least. I didn't say anything to her, I just smiled, but when I got home I cried and cried. My husband was mad and told me that I should have told her off or to mind her own business. In that lady's eyes, I was doing my child an injustice by feeding her a food that her body was not ready for. I couldn't fault her for her comment. I would have liked it better if she would have asked why before she judged me, though.
Bill is right. CF is just not prevalent enough for the rest of the world to understand and it is a very complex thing. I don't like it when I explain it and people say "She'll grow out of it and she'll be fine", but that is an opportunity to educate others IF they're receptive. In many cases they are not, so I just (again) smile and go on about my business. I have received encouraging words, also, but they're hard to come by since negative words seem to stick longer and with more intensity than positive words do. My favorite is "Look at how beautiful she is and how vibrant her personality! That kid has the best of the best going for her and nothing will hold her down". When I get wrapped up in the fact that she has CF, kind words about her and her awesomeness brings me out of it. She has CF, but she's NOT CF.
My thing is ASK before you judge and please listen before you spout off "She'll grow out of it".
 
C

CyrilCrodius

New member
It usually goes like this : *COUGH COUGH COUGH COUGH COUGH COUGH* *People looking at me wondering if I'm okay* "Are you okay?" *Nodding while coughing my lungs out* "Flu?" "Nope, cystic fibrosis." "Oh." That's all.

The thing is, cystic fibrosis is widely known here in Quebec. Many people don't know what it does exactly, but everyone has heard about it at least once. Especially in the area where I live, it's 1 in 1000 births and 1 in 15 people are carriers. We are about 250 CFers in my area and we all attend the same hospital. We have the biggest concentration of CFers in the world.
It seems like CF could really really use an ad campaign in the US and everywhere in the world. I have never seen anyone look down on me because I was coughing, beside a little brat in 4th grade who gave me a disdaining looking when I answered yes to "Is it true that you're sick?". I put her in my idiot mental box and didn't mind it further.
 
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CyrilCrodius

New member
It usually goes like this : *COUGH COUGH COUGH COUGH COUGH COUGH* *People looking at me wondering if I'm okay* "Are you okay?" *Nodding while coughing my lungs out* "Flu?" "Nope, cystic fibrosis." "Oh." That's all.

The thing is, cystic fibrosis is widely known here in Quebec. Many people don't know what it does exactly, but everyone has heard about it at least once. Especially in the area where I live, it's 1 in 1000 births and 1 in 15 people are carriers. We are about 250 CFers in my area and we all attend the same hospital. We have the biggest concentration of CFers in the world.
It seems like CF could really really use an ad campaign in the US and everywhere in the world. I have never seen anyone look down on me because I was coughing, beside a little brat in 4th grade who gave me a disdaining looking when I answered yes to "Is it true that you're sick?". I put her in my idiot mental box and didn't mind it further.
 
K

kayers3

New member
Can't argue with all the above, but here are some things I appreciate:

-When I have a coughing fit in public, my friends/family will often tell passerby "don't worry, she's fine" or the like. This prevents me having to tell well-meaning strangers that I"m fine while I can't breathe. Also, since I hate being stared at, the passerby keep moving and I don't feel so disruptive.

-During a mild coughing fit my friends/family will keep talking. If it gets worse, (and they are talking to me) they will stop and wait for me to finish. I also appreciate during my fits that they automatically get a glass of water/open a water bottle/grab some tissues and patiently hold it for me to grab whenever I'm ready -- all w/out saying anything

-When the people I'm with automatically match their walking pace to mine. I don't have the energy to power walk all over the mall. I hate it when the people I'm with are a yard in front of me and just keep going with me tailing behind or when I have to yell that they really need to slow down.

Hope some of those help. For me, with the people I'm close to, I appreciate that they try to anticipate my needs/remember what I've told them. I've told my friends I can still hear them while I am coughing so to keep talking. They do now. They've seen me tell passerby I'm fine a million times, so now they just do it for me.
 
K

kayers3

New member
Can't argue with all the above, but here are some things I appreciate:

-When I have a coughing fit in public, my friends/family will often tell passerby "don't worry, she's fine" or the like. This prevents me having to tell well-meaning strangers that I"m fine while I can't breathe. Also, since I hate being stared at, the passerby keep moving and I don't feel so disruptive.

-During a mild coughing fit my friends/family will keep talking. If it gets worse, (and they are talking to me) they will stop and wait for me to finish. I also appreciate during my fits that they automatically get a glass of water/open a water bottle/grab some tissues and patiently hold it for me to grab whenever I'm ready -- all w/out saying anything

-When the people I'm with automatically match their walking pace to mine. I don't have the energy to power walk all over the mall. I hate it when the people I'm with are a yard in front of me and just keep going with me tailing behind or when I have to yell that they really need to slow down.

Hope some of those help. For me, with the people I'm close to, I appreciate that they try to anticipate my needs/remember what I've told them. I've told my friends I can still hear them while I am coughing so to keep talking. They do now. They've seen me tell passerby I'm fine a million times, so now they just do it for me.
 
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Hardak

New member
I don't mind the "are you ok?" question, anybody that hangs around a CF patent enough figures it out fairly quickly that.. we are ok. What I don't like is I'll be doing something or attempting to help somebody else out. IE carry a bag of trash, help them move, help in the kitchen. And then get treated like I can't or shouldn't be doing that. Then the other thing that really just pisses me off is smokers. They really have no clue how taxing/dangerous it is on somebody with CF to walk past a smoker walking the opposite direction or have one walk by an open window.
 
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Hardak

New member
I don't mind the "are you ok?" question, anybody that hangs around a CF patent enough figures it out fairly quickly that.. we are ok. What I don't like is I'll be doing something or attempting to help somebody else out. IE carry a bag of trash, help them move, help in the kitchen. And then get treated like I can't or shouldn't be doing that. Then the other thing that really just pisses me off is smokers. They really have no clue how taxing/dangerous it is on somebody with CF to walk past a smoker walking the opposite direction or have one walk by an open window.
 
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