Telling people about Cystic Fibrosis?

[anonymous]

Hi, I have been doing some thinking over the last week and i was wondering if anyone could give me their opinions or help me out. I am a female of 20 years old and i have cystic fibrosis. I was diagnosed when i was born. The only people that know about my cystic fibrosis is my family, a few ex's of mine and 3 really close friends. Im starting to find it difficult to hang on to friends or make friends because i am very secretive of my life and i dont share with anyone that i have a disease. My biggest fear is rejection as well as if i tell someone they will tell someone else. I feel that my disease is my business and i choose to tell who i want and for someone not to run around and tell others.
I was curious as to who tells people about their cf and reactions that occur. I was wondering if i should start telling people but im afraid of other people knowing and thinking different of me or looking at me strange. I would always be curious as to who knows about me and what people are thinking. I know its my life and that cf goes along with me but i also have still not accepted myself for who i am. I find that when i do tell people about my disease my relationships become stronger but yet there are some people that i dont trust and that i feel arent worthy of knowing about my life yet something compels me to tell them thinking that my relationship with them will be better and stronger? Hope i am making any sense and if anyone can please express their thoughts or help me out that would be greatly appreciated.
Thanks alot.
Ashley
20 female w/ cf

 

[Mockingbird]

Yeah, i have the exact same issues with telling people. =-) I push a lot of people away from me because i'm not ready to tell them, or i don't think they really deserve to know. =-) Sounds stuck up, I know, but it's not. I guess I should say some people aren't ready to have someone in their life with an illness. Something like that. Anyway, i don't have very many friends because of that.

I know telling someone I have CF is going to change our relationship. Huge change. =-) Even if it's not apparent, the other person will see me in a completely different light. I guess i've just come to trust my instinct as to who is gonna see me as a valuable frind with CF, instead of a guy who's dying. =-) I'm not doing a vry good job of explaining this, either. =-) Anyway, you're not alone, if that helps at all. =-)

Jarod
22 w/cf

 

[Emily65Roses]

I couldn't really tell you how to go about telling people, because I always have. I grew up as a poster child, and have always been very open about it. Everyone who knows me even the slightest bit knows I've got CF. As far as reactions go, generally I get "good" reactions. That is to say, there's not really a way to get good reactions from someone about CF, but I don't get people turning and running away screaming or anything. You get some people that don't give the best responses, but those people I simply don't get to know. If someone is going to make a face at you when you tell them you have CF, do you really want to know them anyway? I realize most people don't like hearing that, but you know what? CF is here within us. It's not our fault. It's nothing we did or deserved. And it even has its good points. So if someone is going to dislike you based on that, screw them! They don't deserve to be your friend, they don't deserve to even know you. The people that I know well and that know me well have always been very accepting of it.

I've never tried to hide it from people, so I can't really say from experience, but I imagine hiding it must get exhausting. It's so liberating to tell people that care about me about the CF. Because then if I'm having a down day and want to complain a little bit, they know and understand why. They let me complain, hold me while I do it, etc. Plus then I don't need to make excuses for why I need to leave early, or why I'm coughing, or why I walk slow. And on top of that, my Mike takes care of me when I'm having a bad time. He helps me with meds, stays with me in the hospital, etc. Not too long ago I was coughing so hard that I ended up on the floor in the bathroom, throwing up a little bit... and when I was done, Mike helped me up and back to bed, because I was so sore from all the coughing. It's nice to have someone there who understands what's going on and can take care of you. I say the good definitely outweighs the bad. And I can tell you, the people that matter, won't hold it against you at all. <img src="i/expressions/rose.gif" border="0">

 

[ClashPunk82]

Emily,

That's the same with me. I have always told everyone about my CF. Most people are fine with it and are very kind and caring, but you do get the occasional idiot! <img src="i/expressions/face-icon-small-happy.gif" border="0"> I don't know how to really go about telling people since I have always done so. I just think you need to know that it's nothing to be ashamed of and just know that it's a disease and doesn't make you disgusting or weird. It's easier to tell people right off the bat too because then there won't be questions of hey why do you cough so much and hey why do you take those pills. I say just try and be a little more open you will find people appreciate it! <img src="i/expressions/face-icon-small-tongue.gif" border="0">

Nicole 22 CF

 

[anonymous]

I too am very secretive about my disease, but only because I have received odd responses. Most people, I found, became strangely religious or just stupid weird. One friend (who I no longer associate) told me that I was sick because I was not at peace with God and if I found Jesus I would feel better. I also found women to be more standoffish than they already are towards me (I look 16 despite my age of 27).

I have also found that people seem to associate CF with a contagion despite my explanation that CF is a genetic disease. I get responses like, "so its kinda like AIDS right?" or "well, you don't look sick." or "a family member of mine had it and died... wow your such an inspiration (then they stop talking to me)" or they simply cry, begin to treat me different and then they simply stop talking to me.

God forbid my work finds out!!! I might get fired or never promoted.

Oh yeah... one other thing... perhaps its just me, but I also feel that if I tell people that I have CF then they will accuse me of trying to make them feel sorry for me so that I can get laid (women), or so that they will be my friend.

I hate to say it, but I am very social at work, but at home I am pretty much a loner... I have in my 27 years become very cynical and generally distrusting of people.

Sean 27m with CF

 

[Emily65Roses]

Sean,
Just FYI... if you get fired or denied promotions because of the CF, that is covered under the ADA and is ENTIRELY illegal.

Second of all, if people really reacted that way to you, I must say it pisses me off and I find it rather disgusting. I understand why you keep it secret given the responses you've gotten. Which really is a shame, because in general, it's much better to be open. You do get stupid people, I've gotten similar responses, but overall, most of the responses I get are acceptable. And it feels much more free that way. When I meet someone new, I always feel a little off, not myself, odd, until I tell them. Then I feel much more relaxed and better all around. I hope some day you can find someone who doesn't SUCK like most of the people you've met seem to... and who will accept you when you tell them about the CF. Girls like that are out there, you just have to sift through a bunch of losers to find the good ones. I did the same thing with guys. <img src="i/expressions/face-icon-small-wink.gif" border="0">

PS-- I don't think I've seen your name before. If you really are lonely at home (I often am too), feel free to say hi sometime. I'd love to talk!
<img src="i/expressions/rose.gif" border="0">

 

[LindseyRose]

Sorry- I hope I don't start to sound repetative of what everyone else is saying...

When I was in high school, I never really told anyone about my illness as well. And for the same reasons that you don't: fear of rejection, fear of their reaction, etc. I had my close group of friends who knew about my CF but other than that nobody really knew. And I was always weary of making new friends. As I got older I realized that people's reactions were usually based on the way that I carried myself. I talk very confidently about CF and I have a good attitude towards it. You have to read people; if you can see that they don't know what it is, then educate them. Let them ask questions. It helps you feel better because they are interested, and lets them know that they can feel comfortable around you. Basically, I try to relay the message that my disease doesn't bother me (although, we all know we have our moments), so it shouldn't bother them as well.

I agree with Emily when she says it's a very liberating feeling when you do tell people about CF. You don't have to be embarrassed when you start coughing uncontrollably, or feel that you have to lie about why you don't want to go out, etc. You get so much more support. For instance, at the restaurant where I'm a server there are about 50 other servers - all of them know about my CF. When I am in the side station hacking up some throat yogurt, they all know that I don't want them to rush over to me in a panic and ask me if I'm okay. I would rather they just get me a glass of water and some napkins to spit in first and then make sure I'm okay. Every single person in the restaurant has come to learn this. They get me what I need and then go back to whatever they were doing before - and it's no big deal. A few times when I've gone in the hospital all of the servers and bartenders pitched in money so that I could pay my rent because I didn't work for a month! I have only had one instance where I had a bad reaction from someone, and everyone else that heard this girl talk sh*t on me put her in her place and stood up for me. (This girl had the nerve to tell everyone, INCLUDING MY BOYFRIEND, that she "doesn't understand why people feel sorry for me because it's just disgusting when I cough" !!!) Let me just say that she didn't have many friends after that comment, and more than one person literally wanted to punch her in the face. But she is just one of those bad seeds that you toss out.

In a nutshell, I think it would be highly beneficial for you to start telling people about your CF. It doesn't have to be the first thing you tell people about, either. Just be honest with people. If they ask why you cough so much, tell them. Like everyone has said before - if they really do care, it won't bother them. The people it does bother- don't give them the time of day! (and always try to cough on them, it'll make them feel even more like an ass!)

 

[Emily65Roses]

LindseyRoses... Your co-workers sound excellent. And I just wanted to say, people like that make me want to kill. If I was one of your friends, I would've gone on my instinct and literally punched her in the face. <img src="i/expressions/face-icon-small-wink.gif" border="0">

 

[LindseyRose]

Oh, believe me! If I was there I would have done it!

 

[Joblazer86]

i have always told everyone i know. most of the time they have no clue anyway.lol. i have never cared if they told other people but that is just me. I have a lot friends and i have never had anyone reject me b/c of this reason. if they do though screw them

 

[anonymous]

its nice to see that people get good reactions but what if i tell someone and they tell someone else and people that dont deserve to know or people i dont want knowing end up knowing and then i get confronted? Im just very iffy and its like i dunno anymore what to do. Ive grown up in a home where my parents never told anyone and i always asked them why and its like they dont have an answer for me...it seems as though they were ashamed or something and i guess thats why i dont tell people because if they couldnt then how could i! it's not the best feeling to keep it in and i think thats starting to really kill me inside. I wish there was an easy answer to this solution but there isnt. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Ashley
20 female w/ cf

 

[Joblazer86]

i don't mind when people know i want everyone to know so they understand it. if someone confronts me about it i just explain it. they r just curious and i give them props for wanting to learn about it

 

[ej0820]

I grew up not really telling people about my cf. I just never really saw the need to. Now that I'm in college, I still don't tell everyone I meet, although I'm not as secretive about it as I used to be. If my roommate brings in someone while I'm using my vest or something, I don't care. That sort of thing used to really make me feel uneasy. I think the music sorority (I'm in music school <img src="i/expressions/face-icon-small-smile.gif" border="0">...but not the sorority, that isn't my thing, lol ) all knows about it, b/c a few friends that know about my cf are trying to get them to sell cf bands as a service project. Again, I don't really care. I guess, like everyone else, I fear rejection, I don't want people to pitty me because of it, and plus, it bothers me so much when I tell people about it and they just don't get it..."Oh, yeah, my so and so has asthma." "Oh, well, I hope it gets better..." "Those antibiotics probably didn't help your lung infection because of your digestion." Yeah, thanks doc...blah, blah, blah...anywho, I totally hear you out, Ashely about never really knowing who to tell, if you should tell them, whether you should just keep it secret. Me, I'm still working on that.

erin
19/f/cf
IM me if anyone wants to...plainjane192 <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

<blockquote>Quote<br><hr><i>

Oh yeah... one other thing... perhaps its just me, but I also feel that if I tell people that I have CF then they will accuse me of trying to make them feel sorry for me so that I can get laid (women), or so that they will be my friend.





Sean 27m with CF<hr></blockquote>

Did u mention a good tip for getting laid or what lol?So from now on whenever I feel like getting laid i'll tell the lady about my CF lol.. Execuse my sense of humor.

 

[Emily65Roses]

Ashley.... My question is, who cares if people that don't deserve to know find out? I mean... If word "gets around" and people find out, what's so bad about it? I'm not judging, I just honestly don't see why it would bother you. Granted it's not their business, but some people are nosey and if they find out, I don't see why it would matter much. I'm just curious why it would upset you. <img src="i/expressions/rose.gif" border="0">

 

[Magerly111]

Dangit Emily, everytime I read a post, by the time I get to the end, you always manage to ask or say what I want to ask or say. It's like you literally take the words out of my head and type them before I get a chance to. Lol.

But anyway, I am wondering the same thing. If people find out, then they find out. The majority of people that I have known that find out end up just not even thinking about it twice, or they ask me about it. If people don't bother to know what it is, then who cares if they know, you know? And just like Emily, I'm not trying to be rude or anything, just curious. I mean, when I was younger younger, like 13, I never told anyone because of the same reasons everyone didn't tell. But as I got older, and I went in the hospital a few times, people are just kinda like hm, what's wrong with Kim all the time? At this point in my life, I tell a lot of people, whether I trust them or not, because Cf is a part of life, and to me it's just like people going around saying "Kim has dark hair"....its like another fact about me. Some people get more sensitive towards me, and others just act like they don't even know. Sometimes I feel like I have to tell certain people about it, just so when something comes up, they understand at least somewhat, you know. My managers at work know, all of my family and friends know, and even some of the small aquaintances I have know. There's no easy way to tell people without almost blantantly coming out and saying, hey I have CF. This is getting too long.

 

[JennaB]

I feel that the majority of the people in my life do not deserve to know about my CF. I have had very annoying experiences before when telling people - such as they'd ask me if I was okay every time I farted, or asked me if I was cold every two seconds. Then on top of that, they would usually go and tell some other people about it, and then I'd hear the rumour that I was "dying."

I really truly do not care if this makes me sound stuck up, but I have always felt like I had too much pride to go shouting it across the rooftops. I was always embarassed by it even to the point where when I went through IV one week in 9th grade, I pratically skipped the entire week of school.

I think it's a personal choice, and I am happy for those who are able to confidentally tell people about their CF. I personally don't think it's right for me, and I really think it comes down to my personality.

I went to a funeral of a girl that had cancer. She died when she was only 14 years old. The entire time, all the preacher could talk about was her cancer. She would have been really pissed off hearing about all that, because that is the last thing the she wanted people to remember her for. I guess I feel the same about my CF. The thought of my CF mentioned at my funeral pissess me off to no end.

Sorry, just thought I'd vent for a moment... I hope my post wasn't too negative.

 

[anonymous]

im not sure why it bothers me if people find out about my cf i guess its like whoever i tell thats who i want to know and not the whole world. If i wanted to tell them myself i would have and i feel that some people are not worthy of knowing my life and my business. Although this is me and this is who i am i have not yet accepted it yet. If i probably told people i might be able to accept it more because im sure i'd get a lot of support but at the same time im still iffy about everything. I guess its just the way i was brought up. Dont get me wrong i tell some people and when i do i feel so great but sometimes im just not sure who to trust u know? And maybe i am ashamed of who i am because i dont wanna be looked at differently and on a positive note it might help me in my relationships but i guess i will never know unless i start telling people and thats gonna be a really hard choice to make and it will take time.

Just to also let you all know i appreciate your comments and your stories its really nice to have support.

Ashley
20 female w/ cf

 

[Mockingbird]

There are a lot of people that I would definetely not want to know about my Cf, just because they're idiots and it would make my life a bit more difficult. =-) That's kinda my reason, plus I kinda like having secrets. =-) When people do find out, though, it's never really a big deal.

About the telling your boss thing, yeah, getting fired for having CF is super discrimination and way illegal (Why am I talking like keanu reeves?) But the problem is how do you prove it? I remeber reading something from the CFF that said it's difficult to prove that kind of discrimination. Plus I know people who have filed things like that and it takes years and years. =-) Damn screwed up system. Wait, can i get flagged for saying Damn? I guess I'll find out. Anyway, keeping info away from my boss is something i've always been careful about. Most of the jobs I had were small time, so i don't think it ever would have been a problem, but in a huge company job, I can see how someone might get ignored a little bit 'cause they have CF.

 

[ClashPunk82]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Mockingbird</b></i><br>There are a lot of people that I would definetely not want to know about my Cf, just because they're idiots and it would make my life a bit more difficult. =-) That's kinda my reason, plus I kinda like having secrets. =-) When people do find out, though, it's never really a big deal.



About the telling your boss thing, yeah, getting fired for having CF is super discrimination and way illegal (Why am I talking like keanu reeves?) But the problem is how do you prove it? I remeber reading something from the CFF that said it's difficult to prove that kind of discrimination. Plus I know people who have filed things like that and it takes years and years. =-) Damn screwed up system. Wait, can i get flagged for saying Damn? I guess I'll find out. Anyway, keeping info away from my boss is something i've always been careful about. Most of the jobs I had were small time, so i don't think it ever would have been a problem, but in a huge company job, I can see how someone might get ignored a little bit 'cause they have CF.<hr></blockquote>

I agree with it's hard to prove discrimination. My friend and I applied for the same job, which we had already been working at. We were in training to become surgical techs and were doing our clinical together. Well my interview went fabulous and hers didn't go well at all but she ended up with the job. I figured it was because of my CF which they knew I had all along because I felt I had to tell them since I was a student there. I was pretty upset but thought well I didn't want that job anyway and now she is stuck there and hates it!

Nicole 22 CF