Teenagers/young people with CF looking for people to talk to

Milliejrose

New member
Hi I am a 13 year old girl and I have had CF my whole life. I have had it quite easy and am very lucky and healthy as I have never had to stay in hospital and have never had anything terrible wrong with me. I developed a cough two weeks before my school broke up and after about a week or so i was put on antibiotics but they didn't get rid of it, the cough started to lessen but it got worse again, I was never off the antibiotics within the two week time period your meant to take them for. The other day I had my usual checkup and they put me on two different sets of medication instead. Today in school i got this sharp pain in my chest, it was really painful and i told my mum and she said that if it happened again we would contact the doctors. this has happened before but i just brushed it off but this time it was more painful and lasted longer.
Anyway that went a bit long but what i'm trying to say is I'm worried. I know it's normal but I would really love to talk to anyone about it. I don't let myself worry usually because there's usually nothing to worry about but the truth is i'm kind of scared.

I feel alone with CF, i know there is other people out there but i have no one to talk to with it and I'd love to talk to someone as i have been looking for ages and i don't have facebook, my mum wont let me get it yet but i've heard there's good chat rooms on there. Please contact me, I will check this at least once a day. :) - Millie
 

kenna2

Member
I'm sorry to hear about this rough patch you're going through. Sometimes just two weeks of meds don't fix whatever is going on. I've had some treatments that have been two weeks and sometimes as long as four. I've also had my doctors change meds on me because the one's they started with weren't working. It all depends on the bug you have and your doctors are just finding the right combination to kick that bugs butt. Also don't get too upset about your chest pain. You have CF and you're sick...you're lungs are gonna hurt from time to time...lol. Just be aware of your breathing and your game plan of calling the doctors if it gets really bad, is a good one. Just try and not stress, I know it's easier said than done, but the more you stress the the more strain you put on your body. You'll be back on your feet in no time!
 

jricci

Super Moderator
Hi Millie,
I'm not sure if you saw my most recent PM. Good news- There's another mom that would love for her daughter, who is 12, to connect with someone her age with CF. :)
Hopefully this will help you feel not so alone.
 

Milliejrose

New member
Hi Jeannine, yeah I did thanks I think I sent you a pm back but I'm it sure if it sent because I didn't have great wifi :)
 

AnnabelleEvans

New member
Hi, so my name is Anna and I’m recently 14. So... I don’t really get to talk about cf as much as I’d like to, my family doesn’t like taking about it. They aren’t in denial or anything - It’s just that they don’t like taking about the negative sides of it. I have literally never spoken to another person (online or in person) who has cf. I’m hoping to rectify that today.

So. I was diagnosed when I was born, and I’ve basically been at peace with it ever since. I actually kind of enjoy it when people ask why I’m shoving twelve pills into y mouth before every meal - it’s a good conversation starter. But, I’m curios... Has anyone here gotten bullied because of it? I have a bit of a belly due to it, but I’ve never been made fun of. Has anyone on here been teased because of Cystic Fibrosis?
 

kenna2

Member
When I was in 2nd grade, one of my friends laughed at me and told me I looked pregnant because of my CF belly. It did bother me, and I still remember it all these years later. I know she wasn't trying to bully me or be mean, she was just a little kid with no filter. But since then, I actually started to really work on my core. I started doing a lot of abs and swam and ran and by the time I was in 7th grade, I had a 6 pack of abs. Then everyone was jealous. Of course they still stuck out because I will always have a CF belly, but with working out it really helped it go down and tighten it up. People who don't know I have CF thought I was anorexic because I was so skinny, until my friends started sticking up for me and telling them they need to see how much I eat and love to eat. Just remember, if anyone tries to make fun of you for your CF, they have their own issues that didn't start or come from you.
 

LunaFaith

New member
While I wasn't diagnosed until my 20's until recently I had always been underweight and was constantly teased and called anorexic, my good friends would stick up for me and talk about how much I ate at home, because lets face it even 15 years ago school lunches sucked. I can understand the frustration of having no one to talk to it was especially hard for me to adjust to my diagnosis. I was really grateful earlier this year when I attended my first Breathcon and actually got to connect with others that have CF, unfortunately I don't know of any that are centered around adolescents but maybe you or your family can get something out of one of these CFF virtual events

February 27 - CF MiniCon: Self Care and Relationships (for adults with CF and family members)
June 3 – CF FamilyCon, (for adults with CF, family and community members)
August 5 – CF MiniCon: Transplant (for adults with CF and family members)

 
Top