How To Tell Friends

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pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/6/2007 2:54 PM (GMT -7)   
Hi,
 
I'm 14 and living in Australia. I've always had trouble telling people that I have CF. Does anyone have any ideas? I always get questioned about the tablets and was wondering what excuse I could use? I've literally run out! and also how to take them secretly. Would'nt it be great if the tablets came in the form of food......like apples.

Audz
Regular Member


Date Joined Oct 2006
Total Posts : 24
   Posted 2/7/2007 1:25 AM (GMT -7)   
Hey,
 
I'm 15 from Australia and I know exactly how you feel. Ever since highschool I don't know why but I never want my friends to know about my cf, also since I'm year 10 we're doing genetics in science and learning about cf which is a bit awkward, but anyway. I usually take my tablets where no one can see, but if people ask I just say its panadol and if people ask about my cough I just say I have asthma. I don't think thats very good advice, but it's just what I do, hope it helps...
Audz
 
By the way, you should probably just tell your friends, you'd be surprised they might not be that phased by it.

pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/8/2007 2:09 PM (GMT -7)   
Hi Audz,
 
Thanks for the advice, I go to a massive school with about 2,000 girls. I have told some of my friends what I have and one of them (who I do science with) is very supportive. I don't suppose I'll have to tell anybody when I cough because I hardly ever cough......because of all the swimming I do. I usually use the excuse that it's antibiotics and that worked because I had been in hospital with an ankle infection (lucky me) but now that I don't have to take them anymore it's become harder. I also sometimes completely forget to take them, then I end up running back to my locker. Any ideas on how to remember to take them?
 
{{pahiatua}}

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 2/12/2007 6:03 AM (GMT -7)   
I'm personally very open about my CF and every aspect of it, although I do understand that this isn't how most people with CF cope with things. I've had bad experiances of people taking the mess, but somehow that's made me stronger rather than weaker. I think when the Tell 10 campaign came about, it was an ideal time for me. I went along with the campaign and wanted to get the message out about CF as much as I could. In my head, the more people knew about CF, the better it was for me.

I think in a way though, I've always been lucky that all I got was picked on, I know some people have been really badley treated because of there CF. I think it depends on the area that you live in, and how accepting people are.

See your other thread in regards to remembering to take meds:)
It's true!: Smile and the whole world smiles with you. Frown and the world turns upside down.
 Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild liver cirrohsis, mild osteopenia. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
 Allergies: Any dressing except Mepilex border. Even plasters make my skin blister. Hayfever, Tazocin, Tobromycin, Ibruprofen, Asprin, Codeine, Mirtazapine.
I have a pretty little port-a-cath on left side of chest wall


pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/12/2007 1:53 PM (GMT -7)   

Hi Darkie's Gem,

Thanks for your comments! I just happen to go to a really really really big school full of immature girls. My CF has kinda made me more mature and things while I'm in year 9 all the others are just a bunch of screaming idiots who should be in year 7 (academic wise as well......lol). They wouldn't understand very well and I wouldn't just be teased but a social outcast. Practically no one at this school has anything wrong with them, which is really annoying. But I do have a bunch of friends, some know and some don't (I've lost track) but most of them have forgotten so I can pretty much have a normal life (when I'm not sick). I always get the question though, what are those? I have learned to hate that question because of a nosy girl who had the locker next to me last year. She INSPECTED my locker every day to check how clean it was. I ended up having to hide my tablets behind my dictoraries. When she saw them she would just ask a HEAP of questions mad . So it's kinda annoying but she's not in the same building as me anymore.

{{pahiatua}}


pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/12/2007 2:11 PM (GMT -7)   
Everyone please put your comments down, whatever you think!
 
 
Pahiatua}}


pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/13/2007 8:13 PM (GMT -7)   
Hey,

Please post, no matter what you think!
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DJ Stiggie
New Member


Date Joined Feb 2007
Total Posts : 4
   Posted 2/17/2007 5:26 PM (GMT -7)   
I'm 15 and I live in Ireland. Everyone, even a lot of people I don't talk to know I have CF, because I never keep it a secret, I even have to use it as an excuse sometimes, something I don't like doing, for my heavy breathing and why I get breathless so quickly, but most people don't have a problem with it, but there are the problems of why I need Creon, it's not exactly a reason I like sharing, but if you tell people they'll ask a few questions and then they're usually fine with it (well in my experience anyway)

Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/17/2007 5:35 PM (GMT -7)   
Hey, Im 27 and have been all the way through college and have never had anyone treat me poorly because of CF, I dont exactly announce that I have it but people are at least polite enough to recognize that maybe I have a problem and shouldnt be made fun of for it... the only thing I can think of is people always wonder why my thumbs are so big but they never make me feel terrible for it. Personally, the only reason I have chosen not to tell people about it is because I dont want CF to become my identity, I want to be Angie not the "girl with CF" so I just dont tell people unless they ask. I have also found that even if I tell people, they have no idea what it is but they feel like they should so they just dont delve any further. People are weird. Really though, I think that youll find that there are few people who are really low enough to make fun of a person just because they have a chronic disease, if so, they truly have a bigger problem than you!! Just do the best that you can in life and don't worry about what other people think because, really, life is way too short for that!! I know its easier said than done though!!!

pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/19/2007 3:40 PM (GMT -7)   
Thanks for you comments everyone!

I happen to go to a large school filled with rich snobby girls. It's rather annoying and they seem to hone in on people's weaknesses. But so far they haven't found out so I don't have to worry. But my biggest fear is that they will find out and I really don't want to have to go to the counselor at school because I know that they won't understand. I just hope that none of my friend tell someone and the school finds out.
Don't let anyone tell you that you aren't unique, being a sheep is boring. Have your own personality and live it to the fullest
Support 65 Roses Day, 25th May And Help Find A Cure


Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/19/2007 5:08 PM (GMT -7)   
OMG! Thats F'king rediculous (how am I misspelling that??), thank God I never had to deal with such insane petty behavior... Im sorry that you have to deal with it, that should never be an issue and Im shocked that it is (Im not THAT old BTW), at least I only got made fun of for dressing funny :) Maybe if you actually seemed comfortable with it, they would recognize that it isnt a weakness... of course, common sense never comes into play when it comes to insecurity. Im sorry those girls suck, at least you dont!

pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 2/22/2007 2:00 PM (GMT -7)   
Hi,

Sorry for taking ages to reply but school has been hectic with all the work and we're going to Canberra this weekend to visit my sister. Yes, most of the girls at my school are ridiculous (right spelling) and now my cat is being put down and they don't understand why I aren't bursting into tears in front of the at the very mention of a cat. Well I don't display my emotions very well, you could say that I live behind a mask. Hmmmm, if you dressed in black at school you would be sent to the counselors for being "disturbed or an emo" so casual clothes days are just boring. eyes Ah sometimes my school just sucks. I don't know, it's just better if they don't know!


Cya
Don't let anyone tell you that you aren't unique, being a sheep is boring. Have your own personality and live it to the fullest
Support 65 Roses Day, 25th May And Help Find A Cure


Awol
New Member


Date Joined Feb 2007
Total Posts : 14
   Posted 2/22/2007 3:45 PM (GMT -7)   
Im such a dork, I can't believe I didnt know how to spell ridiculous... Im glad that someone half my age was able to correct me... thanks.

You know, you dont have to live with death. It sounds like you just want to be miserable. I lived for a period of my life stuck in my head dwelling on all of the pain that others feel, feeling as though there was no hope for anything or anyone. It was miserable. Sometimes I catch myself going back there, like when I think about all of the craziness in the world and the things that people do to each other, the killing, raping, emotional torture, etc. Yeah, CF doesnt have a very good prognosis but you are alive and every day you have the opportunity to do something positive with your life. "Wearing a mask" and hiding yourself and living in fear is no way to live, you have less time than most people so you need to make good use of that time. You probably think that I just dont understand you and how you feel and the way you think and you could be right but I know myself and I know where Ive been and how extremely low Ive been. Im not very good at correlating those emotions but when you spend a lot time inside your head, without expressing your thoughts to someone else, whatever it is you are thinking about, whether its true or not, becomes reality because there is no one to validate or invalidate you. We need people to keep us in check, if we dont have someone we go insane, lose touch with reality. We all create our own realities, we can choose to be apart of the "shared reality" but for the most part, since we all have our own perspective, we create our own... are you creating the kind of reality that you really want to live in??

Jeez... I dont be presumptuous but Ive experienced a lot and I just want to help... if it doesnt even remotely to pertain to you, then great... if it does, think about it...

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 2/22/2007 5:39 PM (GMT -7)   
Hey! My name is Emily, I'm 17, and I have CF too! I've never been one to broadcast my health issues, and that has worked fine for me. My close friends know, and that's good enough for me.  What does it really matter if everyone knows? If someone asks, I tell. That's pretty much it. When taking meds and people ask me about it, I say I can't digest my food (that is what the enzymes are for), if people ask about treatments or inhalers, I say I have lung problems. It's really no big deal. You shouldn't worry about telling people. It's part of life, and life happens. You'll know who your real friends are if they stick by you. 
 
Well I've gotta go now! Later!
 
Em  
"Sometimes I Thank God for Unanswered Prayers,


 


LittleBird
Regular Member


Date Joined Nov 2005
Total Posts : 36
   Posted 2/28/2007 8:45 PM (GMT -7)   
hey everybody,
I am 20 years old and have what you might call a severe case of CF. I have always been very sick with my CF, the longest I have ever been outside the hospital was 5 months, my hospital stays are always 2-3 weeks, and getting more frequent. now I seem to be in ahout ever 6 or 7 weeks. I have never been able to hide my disease, and I find when I tell people about it, their reaction is a good beromiter to how good a friend they will be. those who freak out, will turn and hide the first time you get really sick, but those who are suportive, and see you for you rather than your disease will be suportive no matter what. CF is a part of your life and there is nothing you can do about it. it is a part of you, it is progressive, it will get worse, and it is best that your friends know about it now while you are still doing well. this isn't to say that I advirtise that I have CF, but I don't hide it, and when things come up they come up. I recently had to drop out of college because I was spending to much time in the hospital I couln't pass my classes. my teachers, and the other students all knew what was going on, they were all suportive, and told me that if I ever could come back I would be welcome. I had a bio major, I know all about studying genetics in school, I practicly tought the unit on CF.
 
I guess the point is, tell your firends, if they arn't suportive of it, find better friends.

NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 3/4/2007 11:24 PM (GMT -7)   
I agree with everyone; if the people around you don't accept you for who you are, then they aren't good enough for you. Just remember that.  
"Sometimes I Thank God for Unanswered Prayers,


 


pahiatua
Regular Member


Date Joined Feb 2007
Total Posts : 43
   Posted 3/17/2007 1:30 AM (GMT -7)   
It can seem so hard sometimes. Holding your head up everyday and telling yourself that you'll be ok. Kinda gets tiring after a while.
Don't let anyone tell you that you aren't unique, being a sheep is boring. Have your own personality and live it to the fullest
Support 65 Roses Day, 25th May And Help Find A Cure


NeefaFeefa
Regular Member


Date Joined Aug 2006
Total Posts : 74
   Posted 3/22/2007 3:33 PM (GMT -7)   
Then stop trying so hard, and just live. You'll feel better for it.


We are the ones, we get knocked down; we get back up and stand above the crowd. We are one.

Emily!



 

Post Edited (NeefaFeefa) : 3/26/2007 3:34:12 PM (GMT-6)


diddles
Regular Member


Date Joined Mar 2007
Total Posts : 35
   Posted 3/25/2007 11:42 PM (GMT -7)   
hi. i'm not sure if i'm doing this right, but i was just reading the thread. I am pretty much just like you, pahiatua, in that I am not good at exhibiting my emotions to other people. except when it comes to my short temper, that is. i feel like i'm living behind a mask, too. it's lonely here. only a few of my good friends know what i have, and i'm comfortable with that. I have had several extremely awkward moments when i've had to explain my pills to people or explain what cf is when it comes up. I never know what to say without freaking people out, you know? that seems to be the case with a lot of the people on here - we don't want a negative reaction. we'll pass on rejection, most of us. no one wants to be different. i especially find it hard because cf is such a small part of me...i'm so completely normal apart from cf that i find it bizarre to have to worry about standing out because of it. anyway, everyone seems so positive on here with comments like "be who you are" and "people who mind don't matter", but..dang...it's hard to keep thinking that way. i guess it just seems that the majority of people are the ones who don't matter, the ones who mind. and that's not exactly comforting.

Firechiefcc
New Member


Date Joined Dec 2006
Total Posts : 7
   Posted 4/1/2007 6:52 PM (GMT -7)   
Hey everyone, my name is Caitlin and I'm 16 living with cf. It sucks a lot and I totally agree with diddles about how hard it is staying positive. I'm home schooling right now, since I missed so much school last year and I pretty much have 2 close friends that really support me. But it gets to me a lot when I'm sick or not able to do something and I just feel like screeming to the world and alot of the time I just cry about it, but then I think: when I stop crying it's still gonna be the same. Then I think maybe I was born with this just to keep me strong or give me insight about life. I just know that theres too many things I want to see and do in life to just stay miserable or give up.

P.S. sorry I got off the subject, I just had to get that out of my system

6t5roses
New Member


Date Joined Apr 2007
Total Posts : 3
   Posted 4/1/2007 8:07 PM (GMT -7)   
My answer to the original posted Question = I have found looking back in to my years at school that you attitude towards CF and telling people has alot to do with there reaction. In year 8 and 9 i was so scared and nervous about CF and letting people know when i told people i was quiet and very basic and didn't go into detail or answer questions. Year 10 i became alot more confident and realised that i was the one who had to live with it so who cares what they thought i told any one who asked and because i was confident and answered questions and had a possitive "this is my life attitude" people changes there out look and reactions to, they became more curious and intrested. Then by the time school was over and we had our formal and graduation people were sugesting ways to fundraise money for CFWA.

That was my case, so now i am very open about it all, it was only the 2 years at the start of high school i was shy of it and they became the 2 worst years suppoprt and friends wise.
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