My sister is 14 and is haveing a hard time with letting people in on what she is going through. She is leaving on a road trip with my parents this weekend and they asked her if she wanted to bring a friend with but she refused because she doesn't want to have to do treatments infront of them. She even has a hard time doing her treatments around my 2 yr old daughter who idolizes her and is not scared how she looks in the vest and with the mask on. I would love to see her stay with friends and go on trips with them. Is there any way to get her to relax about it? We, my parents and I, don't push the subject with her, but I think that she is really missing out.
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How do you feel about people knowing that you have CF?
- Thread starter Beth
- Start date
NoDayButToday
New member
I think basically everyone in my grade knows that I have CF. I was never especially private about it, because at a certain point I realized that it's just easier for it to be that way--not to mention that the ideas people dream up to explain your absences or small stature are always worse than what they can say about you having CF. Last year, some seniors (I was a freshman), started calling me anorexic and were really mean to me. It was really hurtful, but they were a really vicious grade in general (one of their 'hazings' of freshman involved leaving the freshman girl's soccer team alone in the forest in our town, at night, blindfolded and without cell phones).
In terms of my friends, they've seen quite a bit in regards to CF. I do my treatments freely when they sleep over, and I lug my equipment to their houses if I stay there. They visit me in the hospital, have pet names for my feeding tube, have watched my PICC dressings get changed, hang around at home with me when I'm infusing during home IVs, have helped me clean my feeding tube site in the first weeks after its placement-- two of them, out of curiousity, tried my Vest once! They know tons about CF- many of them did CF as their genetic projects for biology.
In terms of my friends, they've seen quite a bit in regards to CF. I do my treatments freely when they sleep over, and I lug my equipment to their houses if I stay there. They visit me in the hospital, have pet names for my feeding tube, have watched my PICC dressings get changed, hang around at home with me when I'm infusing during home IVs, have helped me clean my feeding tube site in the first weeks after its placement-- two of them, out of curiousity, tried my Vest once! They know tons about CF- many of them did CF as their genetic projects for biology.
Beth, my husband Mark sounds just like your sister does about her CF. I wish that he was more open about his CF and the reasons for why he is coughing, sick, missing school... but that is just not him. Teens at your sisters age can be really mean and it's understandable that she wants to protect her CF, kids are curel. Does she have one or two close girl-friends? What about you (not your parents) talking to her about sharing her situation with just one really close friend-someone she has known for a long time? The one thing I can say that seems to differ between my hubbie and your little sis is that he had 1 friend he confided in. Although, he always tried to avoid doing his treatments in front of him-his friend Mitch did/does know about his CF and the basics of what it entails. It's something that she may benefit from by just having a heart to heart with her big sister.
Julie (wife to Mark 24 w/CF)
Julie (wife to Mark 24 w/CF)
tessa55454
New member
I thnk there is a process to accepting CF with others. I remember being in junior high and I pulled out my enzymes which were like 15-20 a meal and stupid kids would see them and say that I am a drug dealer and such. I just say yep, sure am. Some of my closest friends I have always done my treatments in front of them, but they understood and appreciated me sharing that part of my life with them.
I think overall, it can take time to admit to yourself that CF isn't something to be ashamed of. That it is part of us, but it doesn't make yo completely dependent on people. That it is existent, and it's part of my life. I think that when I tell people I educating them in my own way. It also depends if I can trust them or not. Even the other day at my new job a co-worker kind of was trying to befriend me and asked if I wanted to go and get something to eat with her. Now, part of me I like to eat by myself at work because I don't want to talk about work on my break. If it is a person that I have other things to talk about not a problem. But, part of me was number one, I don't think i have things to really talk about to this person besides work-related stuff except for everyday blah.blah.. and then I didn't feel like telling her about my enzymes. I get tired of the broken record in my head of explaining, and I didn't really know if I could trust her fully. I have spoken about it to two people, but we connect with other things.
I think it's really about trust, not being ashamed, and teaching that it's o.k. Again, in certain situations it has taken a while..mostly because i get annoyed.
Tessa 27 w/cf
I think overall, it can take time to admit to yourself that CF isn't something to be ashamed of. That it is part of us, but it doesn't make yo completely dependent on people. That it is existent, and it's part of my life. I think that when I tell people I educating them in my own way. It also depends if I can trust them or not. Even the other day at my new job a co-worker kind of was trying to befriend me and asked if I wanted to go and get something to eat with her. Now, part of me I like to eat by myself at work because I don't want to talk about work on my break. If it is a person that I have other things to talk about not a problem. But, part of me was number one, I don't think i have things to really talk about to this person besides work-related stuff except for everyday blah.blah.. and then I didn't feel like telling her about my enzymes. I get tired of the broken record in my head of explaining, and I didn't really know if I could trust her fully. I have spoken about it to two people, but we connect with other things.
I think it's really about trust, not being ashamed, and teaching that it's o.k. Again, in certain situations it has taken a while..mostly because i get annoyed.
Tessa 27 w/cf
My little sister also had CF. She was very secretive about her CF and health status with everyone. Whatever you can do, help her have an outlet. My sister's last few months were very difficult because she finally started confiding her hopes and fears about her disease, and she seemed to regret she hadn't done it sooner. I also believe that her medical care would have been better managed by being more open. Even at age 22, she still had difficulty planning ahead. I believe that when you grow up not knowing how long you may live, you are unable to look very far ahead. My biggest regret is not being a better supporter to her, although at the time, I did as much as she'd let me. M.
intheIMAGEofHim
New member
Well, I think that CF really test to see if you have good friends or not. B/c My friends all know that I have CF & they are almost as knowledgeable as me about the dieses. It's really cool to see them care for me. & yes sometimes they do make fun of me , but I am always laughing with them.
Anyway my point is& I think it would be good for your sister to let her friends know about cf & let them see what she has to go though all the time. I think they would appreciate her friendship more.
<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
Anyway my point is& I think it would be good for your sister to let her friends know about cf & let them see what she has to go though all the time. I think they would appreciate her friendship more.
<img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><img src="i/expressions/face-icon-small-smile.gif" border="0">
lovingBenandCambree
New member
I am now 25 years old, but when I was younger I was definitely embarrased about having a disease that made me different from others. I can totally relate to her. I never wanted to tell people because I didn't want them to think of me as different. My really close friends knew and were a great support to me. Even if she just had 1 or 2 friends that she could share with I think it would really help her. Sometimes you need someone to talk to about it other than family or drs. As I got older I realized that this disease didn't define me as a person and if people were going to treat me different then I didn't need to be around them. It is hard for a 14 year old to comprehend that though. They have enough to worry about. It is probably good that you don't push her but she will come to learn these things on her own. Maybe talk to her about just telling one of her best friends. I hope this helps
B
benfidelia
Guest
hi i h8 people knowin dat i have cf but only me close m8s know but me sis tells every body and dat pisses me off soz bout me french but it dus write soon
ben
ben
I think everyone in my grade knows i have cf .. they know because when i am in the hospital ... and when i'm absent a lot people wonder .. and i have a good relationship with my teachers and stuff .. so they tell they kids where i am and stuff when they have people sign a get well card ... i do feel weird about doing stuff in front of my friends ... but i got over it ... they are great friends cuz they don't judge me because i have cf ... they treat me normally ... but when it comes to other kids ... since they don't really know what cf is ... i feel like they treat me different ... and like boys don't really want to go out with me ... cuz of my disease they don't like know anything .. it gets me madd ! ... ugh w/e though ... i could be wrong but ... oh well
sorry to "vent" i have a tendency to do that ... =p
sorry to "vent" i have a tendency to do that ... =p
Emily, that really sucks about the guy issue. I'm the same way with people knowing. Well, not completely. I mean, anyone I've known and people in my classes when I was younger all know I have CF. I'm not ashamed of it at all, I just don't like explaining it!! And then the responses always make me feel like I'm asking for sympathy, but it's okay. I've had a lot of boyfriends, so I don't know what's up with the boys in your school. You just have to wait for the good ones to come along; the ones who won't care and will love you and stick by you no matter what. Maybe you'll just have to go somewhere else to fin them!
hey all just thought id add my two cents...
I've sorta become use to letting my close friends in abit on cf... (im 18 now) only because as i got older i needed tehir support more. However its still very difficlut for me, unless im in a "breaking down meltdown" crying my eyes out sort of mood... i basically keep it bottled up until i do need to explode.
Whilst i liek to say im not ashamed to have cf, i do think its an embarrassing disease. Sure all my close friends know about it well, like to ask questions (which i appreciate it) and are use to me coughing. But generally yea its an embarrassing disease. Common! ITS PHLEGM WE ARE TALKING ABOUT LOL.... not the most pleasant of subjects.
I think i would feel more comfortable talking about it if the physical aspect of the disease wasnt something which grossed ppl out (i.e. the word mucous). For example, i have no worries talking about diabetes, or athritus for that matter.
Just my thought... Kaitlen
I've sorta become use to letting my close friends in abit on cf... (im 18 now) only because as i got older i needed tehir support more. However its still very difficlut for me, unless im in a "breaking down meltdown" crying my eyes out sort of mood... i basically keep it bottled up until i do need to explode.
Whilst i liek to say im not ashamed to have cf, i do think its an embarrassing disease. Sure all my close friends know about it well, like to ask questions (which i appreciate it) and are use to me coughing. But generally yea its an embarrassing disease. Common! ITS PHLEGM WE ARE TALKING ABOUT LOL.... not the most pleasant of subjects.
I think i would feel more comfortable talking about it if the physical aspect of the disease wasnt something which grossed ppl out (i.e. the word mucous). For example, i have no worries talking about diabetes, or athritus for that matter.
Just my thought... Kaitlen
Yeah! That's one reason I get embarrassed when people tell me they read about it online...do you know some of the things that are written that just sound flat out disgusting? I tell people that enzymes fix the whole "greasy stool" problem (could they make it sound a weeee bit more pleasent? Please?) And then yeah, I was embarrassed to tell my boyfriend the parts of a treatment, like coughing things up. How could he want to kiss me after that? haha, but he's a great guy (=
But I do like for people in school to know that when I'm coughing a lot, most of the time it isn't because I have cold that they can catch. I'd rather them just know it's my health how it always is.
But yeah, you're rght about the embarrassemnt part, but I just always hope people are mature enough to handle it!
But I do like for people in school to know that when I'm coughing a lot, most of the time it isn't because I have cold that they can catch. I'd rather them just know it's my health how it always is.
But yeah, you're rght about the embarrassemnt part, but I just always hope people are mature enough to handle it!
Hey Just let her know that if they are your true friend it will not matter. They won't make fun of her or anything, sooner or later she will have to come out of her shell and be able. Also let her know that no one is going to tease or make fun of her. Personally i had a friend with this disease and saddly she passed away a year ago this october but she loved it when her friends treated her just like any other kid and i believe that anyone else would do just the same, if she asked all her friends to treat her like any other kid than i bet they would. So just try to help her loosen up and get her to get her friends to treat her like they would any other friend.