Parents with CF children

[anonymous]

Hi,

I get really upset with my my boyfriend's parents.
I don't know if they blame themselves I think that they do.
They just seem to single him out alot he has 2 other sibling w/o CF. They smoke in the house, they tell him to stop coughing as the neighbours might hear etc, they have kept his CF a secret for some reason (I think that when he was born the doctor them to keep it a secret) and hardly anyone knows that he has got it which must be very very hard to keep a secret but he has done that all his life.
I just want to know if any other parents have tried to keep CF a secret with their children????

 

[anonymous]

ABSOLUTLEY NOT!!! There is nothing that is so inaccurate than keeping a person's CF to themselves. And smoking in the house with him livng there???? Wrong!!!!!!!!!!!! How old is your boyfriend? Let him know that is more than OK to talk about his CF, that is how we alert awareness to the world, which in turn makes having fund raisers much more profitable for the CF researchers to find a CURE!!!!!

Please do not let him hold this in anymore than he already has!!! It's OK to have CF, just don't let CF control him, let him control the CF!

 

[anonymous]

Hi
i think that is HORRID that his parents don't let people know whats going on the fact that they smoke is just as HORRID my 19month old has cf and everyone knows about it it is nothing to be a shamed of and when we have company you want to smoke go outside with my husband who smokes.I think his parents need to speak to some form of a counceler to help deal with this.How old is your boyfriend? he needs to speak up and do it now .

 

[AbsintheSorrow]

I say the same things as these last two people. There is NOTHING wrong with people knowing about the CF. And the fact this his parents smoke in the house is really disgusting. I'd tell your boyfriend to speak up if I were you.

 

[anonymous]

My boyfriend is 22 years old he is going to move out soon needs to save a bit more money first.
The thing is though he has kept this a secret for that many years that it would not be easy for him to just tell everyone if you know what I mean. I wish that his parents were open about his CF when he was younger but I reckon that they didn't want him to be the odd one out etc which is very unfair to him because I think that it is eatting away at him about keeping it a secret sometimes. He has been lucky with his CF though he has only had 1 admission which was when he got diagnosed with diabetes and he looks after himself very well so noone would ever predict that he had CF.

 

[AbsintheSorrow]

Maybe help him by telling close friends for now. And then he can get more open with it as time goes on. I think being open with it is much more free and helpful. It's up to each individual, but I think it's much easier to be open about it. Anyone who asks me about it or has known me for any period of time knows about the CF. I grew up in and still live in (when not in Boston for college) a small town, and everyone in the damn town knows I'm the girl with CF. Haha.

 

[Mantaray]

Isn't it worse to be known as the one with cf ? I wonder if it is a good thing to tell everyone about cf. My daughter is only two years old. When she was diagnosed, she was 3 months old, and we were totally overcome. We needed to talk about cf. But now I wonder if it was a good thing for her. Most of our friends have gone away, and now we are alone with our daughter and cf. cf has isolated us. Of course it isn't very clever to hide one's child's illness, but on the other hand people are afraid of cf and most of the time, you remain alone. Now I think I will only talk about cf to close friends and teachers.

 

[AbsintheSorrow]

I assume you might be asking me some of these questions? I don't mind being known as the girl with CF. Most of the people in town treat me the same. I haven't been isolated any more based on the CF alone. I would rather people know anyway. *shrug*

 

[anonymous]

That is so awful that they did that to him. I have two kids with CF (four year old girl and four month old boy). We are very honest and open with them about their disease. We tell my four year old that CF is part of who she is and we ask people to not use the term normal kids. We use the term kids without CF. For those parents to have taught him to be ashamed of who he is, is truly horrible.

 

[anonymous]

Mantaray,
I can relate w/ your posting. I have CF & am in my 30's. I have been very blessed to have minimal symptoms of CF up until this point, so the average person would not be able to tell I have CF, and, therefore I don't get a lot of questions, so I don't tell them about it either.
Well, I have started coming out of my shell & telling a few people that I consider close friends & I have to say, that maybe it's coincidence, but I do notice that they distance themselves. Again, we all lead busy lives, so it could be that they're busy, etc.
I have friends that I think of often, but just don't pick up the phone to call because of busyness, I forget to call, etc, etc and this may also be my friends situation too and I shouldn't take it personal, who knows?
I don't know the best advice for you. I see your point, but am probably the only one here that sees it that way. I don't know if there is a right or wrong answer. One thing about both your & my situation is: maybe these so called friends aren't very good friends anyway if they desert us because of the CF--their loss!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kellimylove]

Hey,
I was diagnosed when I was 10 and I kept is a secret until I was in high school. I was embarrassed and didn't want to be treated differently. I was afraid my classmates would think I was going to get them sick or something. I now am very open and honest and it has been a blessing. There have been so many people who have embraced this, including my amazing husband. I feel for your boyfriend and I'm happy that he has you so he can be around someone sane. I cannot belive his parents act this way. Maybe they just don't know any better. For your boyfriend, he will need a lot of self acceptance but then again don't we all. I hope he can find some true friends to tell his 'secret' to. Some people will freak and push him away, that is normal. Unfortunatly. But then I guess he did't need those people in his life. I always tell people "I have CF, CF doesn't have me." And that seems to work. Hope this helps.
Kelli 26 w. cf

 

[Shelby]

I know how you feel. I am 23 and a single parent to a 9 month old with CF. She was diagnosed in May of this year at 5 months old. Most of my friends were there for the first hospitilization, but now three hospitalizations later most if not all have gone. I talk often about my daughters illness to people that I know. She has a G-tube and a venous port, when they are visiable I get alot of stares. I tell people wht is wrong with her, and explain that she is a pretty normal baby, with the exceptions of brething treatments, meds and oxyegen. I think that is important inform people, in doing so I am hoping that my daughter will have a better understanding

 

[purpleangel28282]

I cannot believe that any parent would force their child to hide their illness like that. I really don't think that their doctor told them to keep your boyfriend's illness a secret, all the doctors I have had encouraged me to tell others and I even had a book about CF when I was really little and it said be open about your illness and explain it to people who don't know what it is. However it is sometimes hard for me to open up to people and tell them that I have it. I'll usually tell closer friends, and they have all been understanding. I find that when you tell people that you have CF you need to tell them about it, otherwise they may start thinking the wrong things about it, such as it's contagious, in fact that's usually the first question they ask. I think in time and with your support your boyfriend will be able to open up more about his disease, and be proud of who he is, CF and all.

 

[anonymous]

Are you kidding me???!!!! There is no shame with someone having CF. And it should not be kept a secret. People with CF are special people, yes....because they have special lungs, and special needs....and trying to keep it a secret will prove to be horrible. Your son will soon feel ashamed of having the disease and feel like a bother to you and others for having to need help with it. Sounds like your b'f parents need some education on CF....they are ignorant to the disease and the needs of your child. Good luck

 

[anonymous]

When my BF told me about his CF when we met about 4 years ago I knew nothing about it but I wanted to know about it I went on the internet etc I was totally shocked that they didn't know anything about it cause they have tried to block it out for so long. My BF really only talks to me about it as his parents don't understand much. Thanks for replying to my messages good to know that I am not the only one that seems shocked about this.

 

[ladybug]

Hi!

I just wanted to add that when I was younger, I told everyone I was "special" and that's why I had to leave class and go take my medicine during school. I also used it alot growing up when I didn't want to go somewhere because there would be smoking around me (parties, etc.) For the most part, it worked in my advantage (not that there is an advantage to having CF aside from maybe not getting cholera <img src="i/expressions/face-icon-small-smile.gif" border="0">) , and don't think I ever really lost "friends" because of it.

I embraced that I was different and instead of trying to hide it, I even organized various fundraisers for CF when I was in high school and college. I realize some people probably looked at me as the one with CF, and although at times this was difficult to get over, I had to let that be my mission in life... Educate and fundraise for my cause. I couldn't get away from what I had, so I took every opportunity to talk about it as I could. Well, not EVERY opportunity, maybe not even many, but whenever it was brought up, I was fine talking about it and telling people how they could help. I was lucky to not loose my support system because of CF (as some on here have unfortunately experienced), and I can't imagine how alone that would make someone who is already facing this disease and their families.

One thing I think is extremely important that no one touched on was that telling your boyfriend to surpress his cough is absolutely the WORST thing we CFers can do! We are supposed to cough and cough and cough, and when we can't cough anymore, we're supposed to take stuff (treatments, etc) that make us cough! If anything, they need to realize that telling people or not, keeping a CFer from coughing is probably shortening his life in imeasurable proportions! The smoking is horrible too, as many heer have already commented on, but keeping yourself from coughing will only lead to infections. Please make sure your boyfriend knows. If they absolutely refuse to tell people about CF, at least blame it on allergies or asthma or something, but make sure he COUGHS!!!
Good luck. <img src="i/expressions/face-icon-small-smile.gif" border="0">