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

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imported_Momto2

New member
Ya know what? If someone shows concern, and that obvious through body language and tone, I'm not all that picky about what words come out to express it. I dont always say the right thing to people, even though I mean well, so I dont expect that from others. I usually base my response on the relationship I have with the person. A close friend will get the nitty gritty, a stranger curious about my hacking, will the get asthma routine and a smile of thanks for asking how I am.

Similarly to other on the board, I really only get pissed off when it a medical profession who is totally ignorant, rude, or just downright nasty.

Oh, and i have never been treated like I cant do something by anyone who knows me. I am usually the person right out in front helping to pick up the sofa and move it. : ) And the folks who dont know me, dont matter.
 
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imported_Momto2

New member
Ya know what? If someone shows concern, and that obvious through body language and tone, I'm not all that picky about what words come out to express it. I dont always say the right thing to people, even though I mean well, so I dont expect that from others. I usually base my response on the relationship I have with the person. A close friend will get the nitty gritty, a stranger curious about my hacking, will the get asthma routine and a smile of thanks for asking how I am.

Similarly to other on the board, I really only get pissed off when it a medical profession who is totally ignorant, rude, or just downright nasty.

Oh, and i have never been treated like I cant do something by anyone who knows me. I am usually the person right out in front helping to pick up the sofa and move it. : ) And the folks who dont know me, dont matter.
 
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nocode

New member
- I like it when people continue to talk if I'm coughing - If they were not talking, I want them to ignore my coughing - I don't like the question "Are you OK?" after coughing - if they know I have CF, they should know it's normal for me to cough. The reason I don't like this question is that the answer would always be 'No, I'm not OK, I just had the 4th coughing fit of the day and it's tiring, but I don't have a choice do I?" - When people find out that I have CF for the first time, I am flexible as to how they respond. I realize that I have been dealing with CF for 13 years (I was diagnosed at 15) but they are hearing it for the first time. I accept shock, empathy, pity, humor, awkwardness, etc. - I like them to ask me about it every once in a while, but not too often. If they ignore it completely and never talk about it, I don't know if they really care. - I used to be very aggressive as a teenager whenever someone brought it up, and my mom says that the people in our family are still afraid to talk about it with me. Hehe. They don't realize I've changed.. (I also live abroad, so...)
- I don't like it when people say "Don't worry, I'm SURE they'll find a cure." - if may be their own denial, but I feel they are trivializing what I go through now when they say that.
The bottom line for me is - when/if the person is in denial it's better not to bring it up. If we don't accept it ourselves, we will hardly accept other people talking and knowing about it. I have this experience because I was diagnosed as a teenager and I went through a hell of a time accepting it, took me years. During that time, I think I was embarrassed, and felt inferior to other people because I was sick, so I didn't want anybody to know. Good luck!
 
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nocode

New member
- I like it when people continue to talk if I'm coughing - If they were not talking, I want them to ignore my coughing - I don't like the question "Are you OK?" after coughing - if they know I have CF, they should know it's normal for me to cough. The reason I don't like this question is that the answer would always be 'No, I'm not OK, I just had the 4th coughing fit of the day and it's tiring, but I don't have a choice do I?" - When people find out that I have CF for the first time, I am flexible as to how they respond. I realize that I have been dealing with CF for 13 years (I was diagnosed at 15) but they are hearing it for the first time. I accept shock, empathy, pity, humor, awkwardness, etc. - I like them to ask me about it every once in a while, but not too often. If they ignore it completely and never talk about it, I don't know if they really care. - I used to be very aggressive as a teenager whenever someone brought it up, and my mom says that the people in our family are still afraid to talk about it with me. Hehe. They don't realize I've changed.. (I also live abroad, so...)
- I don't like it when people say "Don't worry, I'm SURE they'll find a cure." - if may be their own denial, but I feel they are trivializing what I go through now when they say that.
The bottom line for me is - when/if the person is in denial it's better not to bring it up. If we don't accept it ourselves, we will hardly accept other people talking and knowing about it. I have this experience because I was diagnosed as a teenager and I went through a hell of a time accepting it, took me years. During that time, I think I was embarrassed, and felt inferior to other people because I was sick, so I didn't want anybody to know. Good luck!
 
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mwinston87

New member
i dont like the fact that now, since im sick all the time, all people want to talk about is the fact that im always sick. i have cf but its not all that i am. i also hate when i go in for a normal tune up and friends who know i have cf and have been around for forever always respond to the news of a hospital stay with "omg why?!". maybe they just dont know what to say but i mean come on use your brain a little bit! i like for friends and family to make sure to still keep me in the loop about daily stuff that goes on at home when im in the hospital so i can feel involved in the outside world even when im stuck in isolation an hour away from my loved ones!
 
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jbrandyn

New member
Unless it is someone who I have a good enough relationship with that there can be mutual teasing or that I know they are trying to be compassionate, I do not like people talking about my CF symptoms, even if they do not know that they are CF symptoms or that I have CF. It just really bugs me.

I am lucky to live in a place and be surrounded by a lot of people who know about CF, even though I do have to enlighten some people who seem to think that a 21 year old with CF is not long for this world.
 
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CyrilCrodius

New member
<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>kayers3</strong></em> 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.</end quote>

Ah, the people I am close to act like that too. It's lovely. Some even offer to carry me sometimes when walking up slopes! But I find it hard to catch my breath and cough while being carried, so I'd rather walk on my own. I guess that sometimes I will have to accept though.
 
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DonnyJepp

Guest
When I get into a coughing spell in public, I like to have friends around that can do a good Steve Irwin impression. I start coughing and they say to strangers "Crikey, stand back. Don't speak to him or you'll really piss him off." If their Steve Irwin impression is bad or someone doesn't take the hint to leave me alone I extend out these huge head wings and shake them like a Dilophosaurus (http://www.youtube.com/watch?v=JxNhLFJz6iM) then proceed to spit mucus in their eyes! Dilophosaurus head wings are also useful even if you don't have C.F, when people screw up your fastfood order or when the clerk at the store puts my groceries in paper instead of plastic.
 
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Lena Bean

New member
My biggest issue is when people MOCK my cough. It's happened my entire life, I'm an adult and just got a job in a call center and during a training class I heard a couple girls mocking it. It was ridiculous. You'd assume if you're smart enough to graduate high school and obtain a job you'd be capable of keeping rude gestures like that to yourself. Another thing that bothers me is when people compare me to other people they know or have known with CF. I'm not them, CF is pretty much person by person in severity, just because someone you know died young with it doesn't mean I will, just like if they lived 70 years, doesn't mean that I will. It's just as simple as that.

I also get really irritated when people pat my back without me asking too. Unless I just did my nebulizer and am laying either tilted or across your lap and I have taught you how to properly "pound" me. DON'T DO IT! (Yes, I'm 21 and still prefer to get "pounded" over the vest or acapella, unfortunately, it's difficult to get anyone to do it for me, my boyfriend does once in a while though - makes him feel like he's helping.)
 
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