Friends who dont understand!

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intheIMAGEofHim

New member
Hey everyone!<img src="i/expressions/face-icon-small-cool.gif" border="0">

I'm new here...I have CF (of course) along with...CFRD, liver transplant and Lymphoma! I'm 17 and graduating this year! (yeah!) Right now I'm doing ok,

I just need some advice or encouragement right now...My friends are great and all, but they seem to not care that I have Cf. Everyone just goes about their merry way thinking that I'm going to be there forever, I wish they would realize how short our lives are! let alone having Cf!

Anyway, Do any of you have advice for me or maybe I could talk with some of you?
I have never been able to talk with someone else who has Cf, so this forum is <font color=white style="background-color: 3E3E3E;">really awesome!</font ft>

Thanks all!<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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Becstar

New member
hi
i read your thing on the internet and i know what you are talking because my mates do not get what i'm talking about also they do not understands what i'm on about. i hope your liver transplant went well. i have also have a surgery on my left hand-side i had an portacath placed in and after i woke up i was in so much pain but now it is all sweet <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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thefrogprincess

New member
I know its frustrating that your friends don't understand, but they WANT you to be there forever. Its hard for a teenager to think that his or her best friend might not be there for all those big milestones coming in the next 10 or so years.
 
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Emily65Roses

New member
As you get older, people start to understand better. Mind you, some people will always be nonchalant about it, but I'm talking "in general." When I was a teenager, I had more people treat CF like it was just a cough, or asthma. As I've gotten older (as have the people around me), they tend to understand better. Like I said... I still get people that don't understand the severity of it, but as a whole, they're better as you get older. People just tend to comprehend better as they get older, just like you comprehend anything better as you get older, more experience, more knowledge, etc.

On the same level... the better people understand... sometimes the more they deny it, or ignore it altogether. And this is, of course, not to be mean to us. It's a defense mechanism. I have a few close friends that don't address it unless I do... and when I do, they listen to what I have to say. They're usually quiet and don't have a response, and the minute they get the opportunity, they change the subject. My Mike is very similar. He listens to anything I have to say, as often as I have to say it. He's very supportive. But he hates entertaining the idea of me... on oxygen, or facing a transplant, or anything else more severe than where I am. Basically, if it's possible (like I'm not dealing with it yet), he ignores it.

If you ever feel like you really NEED to talk to a friend, sit them down and be serious. Tell them you're having trouble, and you want to talk about the CF, and have them listen and be supportive. If these friends of yours are true friends, they'll listen, even if it hurts. I imagine it hurts like heck (I just tried the other word, and apparently it's a curse word - though I don't know why) to hear someone you love talk about dying... But they are also aware that it helps us to talk about it, so when we need, they'll listen. Mike certainly doesn't like entertaining the thought of me dying... but if I'm in a bad mood and want to talk about, he knows it'll help. So no matter how much it hurts, he listens to it. And in the end, it's helpful to him too. Because whether or not he *wants* to deal with it... he has to. So it's helpful to both of us. Basically... if you feel like you need to talk about it, go to the friend you trust most, and sit them down and tell them in all seriousness that you really need to talk about the CF because it's bothering you, or worrying you, etc etc. Make them listen. A true friend will lend the ear you need.
 
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Becstar

New member
The way you are diagnosed with cystic fibrosis is the doctors give you a sweat test and if your sweat has lots of salt you have it and you also get a whole heap of blood tests at birth but all babies at birth get this treatment so if you do not have cystic fibrosis then your test comes back negative and if you do have CF like me then your test came back postive but your parents do not need to have CF they can just be carries of the disease like my folks are, also if one of your parent CF that may mean that you could have it to becuase there is 25 percent change <img src="i/expressions/sun.gif" border="0">
 
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anonymous

New member
Same here when i was a baby i ate ALOT buti did not gain weight.My parents got concerned about me and they took me to my doctor and ran some tests on me and they found out that i had cf.i was dieginosed<spellin>me with cf.I didnt gane weight so they had to put a feeding tube in me and i had that for 15 years i just got it out 2 months ago.i had a port when i was little to but
 
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anonymous

New member
im a sophmore at red bluff high school, last week i was assigned to do an essay on cystic fibrosis. i have to interview someone and ask them 10 questions. im lost and confused about this disorder. from what iv heard its bad, and i hope you can take the time out of your day to help me with my essay, it woud help me,lt would be a great experience for me since i want to be a nurse. i would appprciate it so much and be so thatnkful if youd help me. my name is destiny
 
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