What should people say when you tell them you have CF?

[LisaV]

So having read my way through the thread about all the really irritating things that people say when you tell them you or your kids have CF, I'm wondering....

What <i>would</i> you like people to say?
What could they say that wouldn't irritate the h@@l out of you?

(Not being a wise a@@ here - just really would like to know.)

 

[RoyalPrince]

since everyone has there own opinions on what they like and dislike about absolutely everything and you can't please everyone all the time no matter what...

i would say the best thing is no big reaction.. and maybe a few questions to help your understanding of the person's condition... and then just treat them like you would if they told you they had asthma or something and not put too much emphasis on it unless the individual wants to talk about it or explain...

i myself do NOT make a big deal about it and expect the same from those around me... if questioned i will answer to the best of my knowledge but i rarely volunteer... I live a normal life, because it is normal to me... everything i do is normal to me... it may not be "normal" to everyone but it is to me... you cannot tell anything is wrong with me by looking at me really (unless you know what to look for) and thats how i expect to be treated...

most with CF do not want to be treated differently or singled out and a big reaction to someone revealing they have cf is almost like being singled out.

Thank you for that question... that shows respect and it IS appreciated...

 

[Emily65Roses]

I personally best like when they ask questions, or say "Oh I know a little about that because of..." XYZ, etc.

Questions show interest, and I love edumacating people. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LisaV</b></i>




What <i>would</i> you like people to say?



(</end quote></div>


I've thought about this a lot and I really have no idea.

 

[Ratatosk]

I don't mind the questions about cf, I love educationg people. It's just when DS was first diagnosed and I'd get the "accusatory he doesn't look sick" comment, as if we were faking and didn't know how to deal with those comments. Or the he'll outgrow it right?.

Or having to tell people when I was so emotional and still reeling from the diagnosis-- I'd get teary eyed and so choked up that I'd speak gibberish, they'd feel like crap or look at DS with pity.

People don't know about CF. I didn't know anything about it except what I saw on that one and only ER episode. That was my only exposure to CF prior to DS being diagnosed. So I think education, awareness is important. I posted earlier this week about a person who works in my building who has a child who frequent upper respiratory infections, failure to thrive, asthma, allergies.... And she and her husband stormed out of a peds appointment because the doctor wanted to test the child for "cerebral fibrosis" -- her husband was "furious because their child isn't retarded". They managed to confuse cystic fibrosis with cerebral palsy, neither of which have anything to do with dimished mental capacity. Grrr!

Liza mom to a 2 1/2 year old wcf

 

[Emily65Roses]

Jeez, that's helpful. I hope you suggested that they go back and let the doc test for CYSTIC fibrosis? Heh.

 

[Ratatosk]

I asked her if her child tasted salty and then explained that they probably meant cystic fibrosis, explained some of the symptoms. Explained a simple test could be done to "rule cf out" and then they could focus on other things and try to find a reason for his health issues. She wasn't interested. She'd rather be angry at the doctor. And another time one of her coworkers was asking me about DS, how they test for CF, symptoms -- this woman's son apparently was diagnosed recently with celiacs -- she was listening intently, so she's aware of DS's symptoms, and the symptoms of CF.

Far as I know, their child still has problems with asthma, staph infections, pneumonia and eating.... It's sad, it angers me that they just don't push for answers. Liza

 

[Landy]

Good question--I'm not sure exactly what I would like for people to say.
I remember telling a lady one time & she said "Oh, I've heard they've made quite a few strides in CF care in the last few years." That was it, no pity, no apology, she just stated that very nonchalantly without coming across as being uncaring.
I wasn't uncomfortable, she wasn't either & that seemed to work for me.
I don't mind answering questions either.

 

[Landy]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ratatosk</b></i>

Far as I know, their child still has problems with asthma, staph infections, pneumonia and eating.... It's sad, it angers me that they just don't push for answers. Liza</end quote></div>


Sounds like a good case of denial to me. I have family that is like that. Don't deal with it, ignore it & hopefully it will go away.

 

[Emily65Roses]

Liza, honestly, in my opinion, that's child abuse. Knowing CF is a risk and not testing because it's "too scary" for the parents?? Totally neglectful and uncalled for. Can you report them or something?

Their denial could really screw that poor kid.

 

[Ratatosk]

I've tried to encourage her to have her child(ren) tested. I always ask her how her kids are, she always asks me if DS is still being a picky eater -- specifically asks me how he's doing weight-wise, what percentile he's in. Her little boy is a couple years older than mine and she has a daughter a little younger than ds. I make sure I mention CF, clinic appointments, treatments...

She's always taking her kids to the doctor for various infections and ailments, though just not to the peds doctor who suggested the test. I would hope that someday, somehow that one of the doctors she is taking her children to, would have a lightbulb go on and test.

 

[Allie]

Ry usually trated it fairly nonchalantly when telling people, so most of the time they were good at taking their lead from him and feeling free to talk about it, joke about it, ask questions. I think sometimes how you deal with it helps them know how. Really, the best times for us were when people just treated it like it was another part of RY, but it didn't make him 'different'.

 

[Faust]

I prefer: "Please die via guatamalan crotch rot while burning alive". I feel it's the most pleasant response.

 

[Rokiss12]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

I personally best like when they ask questions, or say "Oh I know a little about that because of..." XYZ, etc.



Questions show interest, and I love edumacating people. <img src=""></end quote></div>



hehe i agree emily <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Scarlett81]

Good question-

I honestly have no problem when people say things like-wow, you handle this so well, or, you never complain, or, you seem so healthy/strong, whatever.
And I do appreciate it when people genuinely have no clue what it is and ask for info about it. Gives me the opportunity to fill them in. If it's someone I know well, I appreciate if they ask if I need anything- help, groceries, housecleaning. Even if I don't I appreciate the gesture.

The only thing I don't like to hear is, 'I had an acquaintance that died from that'-I think you should know better. That makes me feel like an old invalid.

 

[anonymous]

i've recently been to new dentist with my son who has cf. while reading my sons medical notes he asked if he still has cf. oh i was quietly bloody fuming. i thought it was insensitive. i'm aware he is not a dr. but a little more tact would go a long way. is it me or am i too sensitive?

 

[anonymous]

The dentist didn't know it was a genetic thing that doesn't go away. With that in mind, why was it insensitive for him to ask if your son still had it? Obviously he was totally wrong, but I do not see how he was insensitve. Two different things.

 

[JazzysMom]

I have to say that unless a Dentist has dealt with other CFers that he might not have any idea what it is......give him slack IMHO!