A Real Inspiration...

[chantelfox]

I don't know how many of you have MSN as your homepage, but
yesterday and today there is a video clip in the "Video
Highlights" section about a girl, Emily Schriver, age 13, who
has CF. Apparently she was diagnosed with it at age 9 and a
week after the diagnosis she decided to begin this fundraiser to
raise money for the CFF. She swims 100 laps and people donate money
per lap. It really is an inspirational story. I always admire
people like Emily.  <br>
<br>
I am ashamed to admit that growing up I was no where near as
courageous as this young lady. I never told anyone about my CF
(unless they were a best friend and it took about a year before I
could manage tell them) and often told people the reason I
coughed was because of my "asthma". To this day I still
don't know why I felt compelled to keep it a secret (and still do).
I guess I just didn't want people to think I was "sick"
and treat me different. Has anyone had this issue? I really wish
that I could have gotten over it, because I would love to be
someone who helps in the fight against this disease and make people
more aware of it. From  what I have experienced, people can
have the tendency to get really scared when I manage to get out the
words "cystic fibrosis". Most people have immediately
responded with "are you going to die?". Really it is the
people who have been getting close to you for a period of time
(friends, significant others) that get scared because they hear it
and don't know much about it, except that it can be terminal, but
LIFE is terminal! I just wish people knew more about it and
the fact that it's no longer a "childhood terminal
illness", like it was 50 years ago.  I dated a guy for a
month about 4 years ago who stopped returning my phone
calls the very next day after I told him.  After that happened
I managed to tell a friend who began to REALLY pressure me to tell
the whole College Group Bible Study of about 50 people at the
church I was going to. She made it seem like I was lying if I did
not tell a bunch of strangers about my CF. It got to the point that
I felt like I was a Lepper. I began to get really frustrated and
depressed, because I didn't feel like it was anyone's business but
mine and those who I chose to tell. Right before I left that church
I asked myself, "If it were diabetes that I had and not CF,
would I have to stand up and confess that to the whole
congregation?". I didn't se the big deal about telling a bunch
of people I hardly knew and hardly talked to.<br>
<br>
Has anyone had issues with telling people about your CF or am I a
total freak??? <img src=""> I really admire you people who get out there
and don't care about letting the whole world know about this
condition and I want to thank you from the bottom of my heart,
because it's your courage that helps people understand this thing
and not be so frightened of this condition.<br>
<br>
 Take care all and Happy 4th of JULY!!!!!!!!!<br>
<br>
Chantel

 

[coltsfan715]

HAPPY FOURTH TO YOU TOO!!

As for your question ... YES I felt this way well into high school. I ended up getting over it around my senior year because someone from the CF Foundation came to our school to talk about CF at my and my family's request. We simply asked her to not mention that I had CF because I didn't want to attention from it. Well I wasn't present at the assembly (thank the lord) and she ended up outing me in a sense. She just came right and and said ... you all know someone with CF that goes to this school her name is .... blah blah blah. That night several of my friends called (they all knew, but at that time they had been the only ones who knew - that and my teachers) they were all a bit upset and told me what happened. Once I realized that people weren't going to treat me like an outcast for having CF I was okay with it. At first there were alot of questions from people, but the great thing was that everyone stopped picking on me for coughing all the time and for having to take pills and stuff. They finally realized I couldn't help it and I had to do certain things to stay alive basically.
Now it isn't so hard. When people ask why I cough - I just say are you are you really interested or do you just want to hear ... it is because of allergies because that is what I used to always say allergies or that I kind of had asthma. Then I just say I have CF .. it is a genetic disease that affects my lungs blah blah blah. I was really upset at first when the lady with the CFF "outed me" to my school, but I am glad that she did because I probably never would have taken the step to do it and it needed to be done. I am so much happier with myself now, where before I was always hiding a very big part of me from people now I can be more open about it.

Have a great fourth,
Lindsey

 

[curb24]

Hey happy 4th of july to you too.
I'm only 14 idk if i should be replying to this because its in the adult section, but ill deal you'll have to deal with it...

The whole "are you going to die" thing gets me too. I just smile poiletly at them and say "I havn't died yet."

Sometimes i have trouble telling people too, like its hard for me to cough in class because i dont want people freaking out. And I go to tthe clinic to take my medicine everyday so they ask about that, i guess its hard to tell them that i have a disease because i know they will start asking a lot of questions, but sometimes they dont ask because they know it isnt any of their buisness to really know. I myself actaully dont know a lot about CF. because i have only be hospitalized once for it. I take tons of medicines like you probably do, but i havnt really understood what they do to explain it to them. But if you do tell people you wont be emarrased about taking your medicine or coughing too hard. I understand not telling people about it, and i bet a lot of other people understand too like you dont want them to feel bad for you but you want them to understand anyways. I wish you luck for when you need to tell anyone else about CF.




Joanie

 

[chantelfox]

Wow, Lindsey!! I think I might have ACTUALLY died if someone outed
me to my whole school in HS!  lol... I am happy for you that
you are comfortable telling people about it. As for the coughing
thing, I hear ya!  People where I worked last year would look
at me and I SWEAR they thought I had TB or something because of how
I coughed. I think they were afraid to be around me, yet I still
could not bring myself to say what was really going on. That's
another thing you said "I was always hiding a very big part of
me from people". I feel so bad sometimes about hiding
something that is such a huge part of my life and has, in a way,
made me who  I am today.  Thanks for the response!
 

<br>
<br>
<br>
Edited to say: You too Joanie!  I completely went through the
whole " I don't want to cough in class" thing and still
do sometimes i/expressions/face-icon-small-smile.gif"
border="0 and youre' right it is hard to tell people who
don't know about it, I think if it was more well-known and not such
a scary thing to people who know very little about it, it would be
much easier. That's why I wish I could bring myself to tell more
people about it.<br>
<br>
Heh.. I just remember something my mom told me that I did when I
was about 3or 4 years old. I had just been told by my mom
about having CF. I was too young to  understand I was
different before that, I guess. But, so, we went to the grocery
store and we were checking out at the counter and I was sitting in
the basket and I turned to the clerk and said "I have
CF!"  haha... Now why couldn't I have kept up that
attitude i/expressions/face-icon-small-smile.gif"
border="0

 

[Allisa35]

I've also felt this way, espeically in my school years. More so in grade school. Back then, (and still today), a lot of people didn't know what CF was. My best friend knew and a few of the other kids, but I usually didn't tell anybody. I think I didn't want them to know because I thought that they would think they could "catch" it from me and wouldn't realizing that it was/is a genetic disease. Even into high school, I really didn't mention it to anybody. Luckily, I was never picked on!!! I've gotten better about it over the years. Now that I'm getting older, it doesn't bother me quit as much.

 

[JazzysMom]

I dont ever remember hiding my CF. I used it many times as a topic or source fort school projects & tho I was never "ashamed" of it.....I didnt go yelling "HEY I HAVE CF"! Then again I didnt need to. I lived in a tiny town & went to a small school so I think half the people were related to me (LOL just a hill billy type joke that my Hubby would throw in). The only time I remember being uncomfortable was when another CFer (who I didnt not know) passed away & word got out about it so everyone in school looked at me like I was going to drop dead right there. I just reassured them that it wouldnt happen until lunch!

 

[sue35]

Chantel we have to stop being the same person!

Yes I still find it very very hard to tell people. I never told anyone growing up and even my best friends I took over a year to tell. I just didn't want them to judge me and deep down I was afraid that they would stop being my friend or pity me or something. I do tell people more willingly now but it is still only close friends. I admire all those who tell anyone or who do fundraisers for it, I just can't at this time. I would liked to have done the CF walk and my friends offered to do it for me but I just still don't feel comfortable to do it.

I know that people probably wonder why I don't tell more people but that is just me. My boyfriend does know but I am afraid I even kind of lied to him. When I told him I said that it was no big deal and that I had a really mild case and that it wouldn't affect my life span or anything. I have a feeling that he knows this isn't totally the case but he hasn't made it seem like he wants to know and I am fine with that.

Oh and when I cough I just say it is chronic and I have asthma. Someone tried to out me at work and I made a big deal of "allergies"<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[wanderlost]

I still rarely tell, and I too use the asthma thing - it's easier and people just nod and say oh. You say CF and you get the big eyes and a sort of oh no! response that I hate. I have been lucky enough that I haven't really had to tell a lot of people. All my close friends know, but no one that I work with knows. I have gotten much better about telling, but I am still not the the point that Jazzysmom mentioned of being able to say "HEY I HAVE CF!" Maybe someday, but not yet.

 

[chantelfox]

Sue, that's too weird!  Yeah, I think we might be living the
same life. ha!... I hid it from my current BF for 4 months before I
told him. I felt bad, but I was sooo afraid he would leave me like
the other guy did. When I told him, I saw his eyes start to tear up
and I was like "Oh, no, Oh no!!, What did I just
do??!!" then the first thing out of his mouth was
something about that girl "frankie" from MTV's real world
and I was like,"I am NOT like her!"  I think she
made CF look extra bad to people who don't know much about it.
I mean, she smoked, drank and such and all my BF knew was that she
talked a lot about dying. I told him, of course she might die,
she's got a "lung disease"; and she freakin smoked
cloves!!! In the end, he has been such a wonderful support for me
these past 2 years.<br>
<br>
I can't believe someone tried to out you at work!!  

 

[coltsfan715]

<div class="FTQUOTE"><begin quote>I hid it from my current BF for 4 months before I told him.

~Chantel</end quote></div>

I actually got a really great piece of advice from my first B/F from HS - he was a bit jerky but this was worth remembering. I hadn't ever really told him I had CF and we were together for about a year. I knew that he knew about it through friends and our parents were close and all, so I just never said anything. When we broke up he just looked at me and was like ya know I just think that you should know.... I would have liked it if you had told me you had CF ... maybe with the other guys you date in the future you should tell them ... and I wouldn't wait a year to do it I would tell them pretty early so they can understand you a bit more -- he meant with all the meds and the time I had to spend on treatments and things. It was one of those YEAH easier said than done my friend moments, but it has really helped me when it has come to telling guys that I dated - alot of the doubt in "should I tell him now?" kind of went away when I thought of that and I really haven't had a bad response on initially telling them.

<div class="FTQUOTE"><begin quote>The only time I remember being uncomfortable was when another CFer (who I didnt not know) passed away & word got out about it so everyone in school looked at me like I was going to drop dead right there. I just reassured them that it wouldnt happen until lunch!

~Melissa </end quote></div>

OMG this reminded me of something from HS. My sophomore year my friends and I were all split up and sent to different HSs with the districting. Well I ended up going in the hospital, after having not gone in for about 3 years or so. When I wasn't at school for a week a girl I knew asked my best friend where I was - she said that I was sick and in the hospital but I would be fine. Then like the game telephone the rumor mill started working. That girl told one of her friends at another HS that I was not doing to well that I was sick and in the hospital. Which turned into She isn't doing to well she is in the hospital ... I hope you see where this is going. By the end of the week all four high schools in the county had me dead. I had to call all my friends and reassure them I was still alive and kicking. It is funny to look back on it, but upsetting for my friends when it happened.

Lindsey

 

[chantelfox]

HAha! Lindsey your HS experience reminds me of the one I had in HS.
I had to go to the hospital my sophmore year. When I was in
there, I actually caught like a bug or something that made me
worse. So, I went from about 100 lbs when I entered the
hospital to 90 lbs by the time I was released to do home IVs.
 I came back to school and I guess people had noticed I was
gone for a couple weeks. Come to find out <i>two years later</i>
(from my friends) that people were saying I had gone into the
hospital for an eating disorder! I am guessing that coming back a
90 pound skeleton added some fuel to that rumor's fire... I still
don't know why my friends didn't tell me until 2 years later.

 

[sue35]

Ha ha! gotta love the HS times

When I was in high school I found out that all of my friends went to the social worker about me saying that I was anorexic because I was so small. They then told everyone else that I had a problem so everyone was watching what I ate. I realized then that it was time to tell them everything about Cf. But all year the social worker would call my mom for check-ins about my eating disorder and all my friends would look at me weird if i wouldn't eat. To this day I think they still think i had an eating disorder<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Jane]

My son sounds so much like you guys. In fact I'm going to have him read these.

When he was in elementary school he used to think it was cool to have friends see his PICC line (gross 'em out) and it was fun to have friends go to the nurse with him for his "zymes. He alway liked it when we sent a note to classmates about GREAT STRIDES. Until about fifth grade. That was it.

No one could know after that. He got very introverted. He was in the hospital for a month in 7th grade and he wouldn't let me tell people where he was. Of course, if people don't know you are in the hospital, they won't send cards or call. Its very isolating. He hasn't been the same since. He told me recently since then people treated him different. I told him I thought he treated himself differently after that, they just followed his lead. Its very sad because he had some great friends who would have supported him.

This young girl is amazing.

 

[beautifulsoul]

I have read about Emily in my American girl magazine! There was a small section about her a couple months ago. She is really strong and inspiring.

Jane, When I had a PICC line in elementary school I liked to show my friends like your son did! Some thought it was cool and others were grossed out! lol. In middle school my german techer made a video of me telling all the students what CF is and stuff. She showed it to the whole school! I thought it was kinda cool at the time but then afterwards everyone is just so protective! They were TOO nice to me if you know what I mean. Or always asking if I was ok. I was getting tired of all the attention But I'm glad I'm in high school now.

--------------------
Amber/turning 15 in August,yeah!

w/CF/CFRD