Message Boards for the CF Trust

Replies: 8 Pages: 1

sunseasand

Posts: 74
Registered: 10-Nov-2006

what would you say?
Posted: 12-Dec-2006 23:47

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Hi, I really need some good advise from you wonderful lot! My son aged 14 is again in hospital for more I.V's, but he gets really fed up with kids at his school always asking where he as been. He does not want to tell them about cf because he says that they don't stop asking every question imaginable. Anyone got any really witty, knock-them-off their high horse ways he could tell them. All they know is he has been in hospital for a chest infection and he wants to keep it like that, but you always get one who wants to know more. "Mind your own business!" is just one of a few he says to them, maybe not in those exact words. He likes to act really cool and just feels that at the moment in his stage of life cf he wants to keep at home. Any suggestions or how you lot cope with kids at school will really help. from sunseasand.

average mike

Posts: 13
From: Brighton/Taunton
Registered: 12-Dec-2006

Re: what would you say?
Posted: 13-Dec-2006 00:41

Reply

Id say it would actually be better to tell the truth. Learning to be open about CF is so important. I was always cagey about it all my life until I found myself at 21 feeling so detatched from everybody my age because I thought they wouldn't understand my worsening health conditions. It made me feel really left out and actually really depressed.

Ive since learned to be much more open about my CF, and although some people still will never understand, I feel a lot better about myself. I really would encourage your son to be open and honest with his school mates, he will be much better off in the end. There is nothing wrong with them asking questions... your son could help them learn a lot making them more sensitive people themselves! Hope I don't sound preachy, but I really do beleive in this. Telling them to mind their own business is only harming him in my opinion!

mikey

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: what would you say?
Posted: 13-Dec-2006 17:48

Reply

Thanks for that I did let him read your comments and he may just take your advise. I do know what you mean about being as open as you can, but it can also easily back-fire when kids fall-out with each other and they can be so cruel. But I know where you are coming from and I personally feel that you should weigh up each situation. Some people you can no way tell and some you just know they would understand, it is just letting him know how to get the balance right. Thanks for your help. from sunseasand.

average mike

Posts: 13
From: Brighton/Taunton
Registered: 12-Dec-2006

Re: what would you say?
Posted: 13-Dec-2006 21:47

Reply

When I was in secondary school, my parents encouraged me to do to presentations and talks about CF whenever the opportunity arose (like the presentations you do in english lessons and such). Not sure if your son gets to do presentations on subjects he can pick, but if the opportunity does come up, do it on CF. He doesnt even have to say he has it, but in explaining CF to the other kids, they will understand more if and when he feels upto telling his contemporaries he has it.

I totally understand he probably would prefer certain kids to know as little as possible about him, let alone that he is ill. However, when I was at school, even all the nastier bully boys gave me a certain sort of respect because they knew what CF was and that I had it. Never was I given abuse to do with the CF. Then again, some kids these days do seem like complete b***ards!! It has to be upto your son though. Good luck to him!

Mogzi luvz ya

Posts: 65
From: East sussex
Registered: 06-Dec-2006

Re: what would you say?
Posted: 14-Dec-2006 21:45

Reply

Hiya, i'm 15, so quite a close age 2 ya son. I keep my cf pretty quiet. I mean all my best girl mates know and a few other girls, i dont reli mind tellin my girls but hardly ne' guys know. I dont wanna tell them, cos, i feel like they myt judge me different. Wen i used 2 hav 2 stay in Hospital, i'd jus tell ppl i'd been ill and most ppl left it at that, obvs my best mates already knew.

As u get older it gets alot easier, cos ppl become more aware through science and also ppl are much more mature about things.I think u jus gotta do wat ya feel comforable wit, tell da friends u trusy and tell ppl in ya own tym. My friends av told me tym n tym agen, marisa whoever u tell, no1 will judge u different at all, cos i was reli worried about tellin my boyfriend wen i was wit him! We split up b4 i got a chance tho, but i will tell the next 1!

omg, i've jus babbled loads, bet none of maakes sense let alone helps, if ur son ever feels like talkin, he shud cum on ere n evry1 will help him + wen i get my msn workin can talk on der or summin!

sunseasand

Posts: 74
Registered: 10-Nov-2006

Re: what would you say?
Posted: 17-Dec-2006 22:51

Reply

Thanks average mike and mogzi for your advise, every bit of information really helps. I keep asking my son to go on here but at the moment he is not interested. It would be so good for him to talk to others his age where he can relate to them. Problem is he does not fully understand the average age cf people live to and I know it is only average and quite a few live a lot longer, I don't know how he would react to this information. I am sure he probably knows more than I think but I have told him in a round about way, but so scare of how he would react, not sure if he would be angry or so upset that he would get depressed....I just don't know. from sunseasand.

Mogzi luvz ya

Posts: 65
From: East sussex
Registered: 06-Dec-2006

Re: what would you say?
Posted: 17-Dec-2006 22:55

Reply

Did u say he is 14? wat age was he diagnosed with cystic fibrosis? he shud cum on, no-1 reli talks about life expectancy, half the tym we chat bout non cf related stuff! and we jus help eachuva at bad times. I dont c myself ne different 2 ne'1 else ne'way and i hav planned my future cos u jus gotta look at da good side of life!

laurenpope

Posts: 3
From: heartfordshire
Registered: 18-Dec-2006

Re: what would you say?
Posted: 18-Dec-2006 15:15

Reply

elo i can help yu wiv yur problem n all i eva sai is tht i was on hoilai

emzii

Posts: 1
From: leicestershire
Registered: 18-Dec-2006

Re: what would you say?
Posted: 18-Dec-2006 20:30

Reply

Hi!!
I would say that your son should be honest about the situation. CF is hard to hide and it's not something to be ashamed of. I'm 14 too and my whole school knows. We had a talk about it (our cf nurse came in) and now people are fine with it and i only get the odd comment/question. He might not like this but getting it out in the open is the best way to deal with it. Other cfs that i know find this to be true too.
I hope my comments have helped!!! If not, i hope you find a solution.
xoxox