CF attitudes and anecdotes

[anonymous]

Hi guys,

I'm a creative writing student at university and I have CF. For my dissertation I've decided to attempt a novella about a number of cystic fibrosis sufferers, all of which have very contrasting ways of coping with thedisease and alternative attitudes towards reavealing symptoms and discussing it.

From the fiction I've read about characters with CF they all seems to fall into the bracket of being tragic characters used to gain sympathy from the reader as the struggle with the disease. While there is nothing wrong with this, I feel that having Cf myself I am in the position to construct some more positive characters with CF who really tell it how it is. For example, I'm sure that for every CF sufferer who falls under the cliche of "just wanting to be treated normal" there are those who love the attention and play on the stigma of having a life threatening disease to their advantage at every opportunity. Perhaps for a charcter who has used CF to define his whole personality a cure would be more of a nightmare than a dream? I know topics like this may be considered a taboo area and I am well aware that I can't write from the perspective of every CF sufferer so what I was hoping for was to start a discussion about how each of us cope with CF when we're meeting new people. Does anyone have examples of going to absurd lengths to hide their CF? Does anyone flaunt it? How do you find it affects your relationships with friends, your love life etc? Does anyone have a problem with me writing about this and if so why? Also, any anecdotes about funny, embarrassing, offensive encounters you've had due to CF would be a great help to me. I hope we can get a discussion going. My main aim is to write about CF more openly and honestly and to break some cliches of characters faced with life threatening illness.

Thanks for your help guys,
Marsh

 

[anonymous]

Well Marsh,
I have lived a great life! have not put so much focus on my illness but it's truely hard for people not to question why I am always clearing my throat. Unfortunately there will always be people like you who are not so succinct in their approach to life. Cystic Fibrosis is a debilitating disease, I have witnessed a brother and sister lose their battle with CF, [ so I do know a little about CF] and have reached the great age of 53, knowing that every day is precious, and have not allowed CF to dominate 'me' .

 

[thefrogprincess]

My parents never sugar coated things for me so I have always been really open with people about my CF. People are always asking why I cough so much anyway or saying stuff like "You're so thin, I'm jealous!" So I straighten them out. Believe me I would rather be fat than have CF!

I don't think a cure would be a nightmare. Cf has made me the person I am and even if they find a cure tomorrow I'll still be me. I'll just get to sleep in longer because I won't be doing treatments in the morning. That would be great!

 

[anonymous]

Interesting thread!

I am not writing about myself but rather for my boyfriend whom doesn't speak English (but I still tought you'd be interested in reading this)

He is now 23, he has never hidden having CF buthas never flaunted it either let me explain. He takes his meds in front of everyone butrarely offers explanations for it (unless someone asks or looks intensively at the bottle). He is not shy and certainly doesn't mind people knowing. What he does mind however is being pitied or trated like an invalid (as I assume most people do). He will gladly explain CF to anyone who wants to knwo or asks, his friends have explained the disease a lot too (like explaining classmates why he was not coming to school), by the end of his first year of High School everyone knew (in his year) that he had CF and it certainly didn't bother hijm. On the other hand, he doesn't like people to believe he is flaunting his disease and trying to get away easy. For example, he is a fan of improvisation (ok I'm not sure if it's the right english word but I'm too lazy to reach for the dictionnary...) a player from another team once told him that he was faking the coughts and being tired, that he basically was seeking the attention because he didn't LOOK sick and let me tell you that really pissed him off and he gave that guy a good talking to.

I guess you could say he's just honest and upfront about it.

Amélie

 

[Mockingbird]

Just recently, I had to have a PICC line put in. I decided to do it at home, because I'm just finally managing to be able to keep a job for the first time in over a year, and if I take any time off, I'm sure I'll get replaced. It is a job cooking at an alzheimer's assisted living facility, and I only work one day a week. It's not the greatest job, and I can usually barely get through the one day, but like I said before, it's the one job I've actually managed to keep, and I didn't want anything to ruin that. So anyway, I got my PICC line on the Friday before Easter weekend. Since it was Easter, I was sceduled to work both days on the weekend instead of my usual one. Well, unfortuately, the home nurse stopped by and mentioned how I shouldn't be working for at least a couple days after I started the antibiotics. Then she made it a point to tell that to the people I'm living with. There was no way I was gonna miss work. I worked way too hard to risk losing another job because either I couldn't keep up with everyone else, or because I had to take too much time off, so, I pretty much lied to everyone saying I'd stay home when the whole time i was planning to sneek off and go to work anyway. I did fine at work; the antibiotics didn't seem to drag me down any more than usual. My only problem the whole day was worrying if my picc line was still hidden (No one at work knows about my CF, and I try to keep it that way just in case they have some sort of policy of firing CFers, or something like that. =-) So, I went home that night, and everyone was pissed off at me. Not that I really cared; they don't understand what it's like to have CF, to have to struggle just to keep a simple job. There was another nurse who came that night. She found out I went to work, and said I absolutely could not go to work the next day. So, I lied to everyone all over again and went anyway. (Seriously, did they really expect me to call in on Easter and make someone else work. The someone else who would have had to work just happened to be my boss, so i wasn't gonna risk it.) Somehow I managed to get through the day (I was sooooo worn out.) and I came home where everyone was even more pissed at me. I got the silent treatment for the rest of the night, which actually worked out, 'cause I wasn't really in the mood for talking.

This story doesn't really have an ending. I guess it's just a little peice of my personality; how sometimes I want to be so stronger than my CF, I don't let anything stand in my way. I guess it's important for me to know I can still take control of my life when I need to, instead of sacrificing everything for my health. Not an admirable trait, really. It's not really worth it to risk so much just for a one-day-a-week job. Now that it's over and I made it through, though, I do feel better. Maybe that was the point all along.

Jarod
22 w/cf

 

[Emily65Roses]

I don't know if this will be helpful at all, but I have a little story similar to Jarod's. (By the way, Jarod, I would've done the same thing, so good job! <img src="i/expressions/face-icon-small-wink.gif" border="0">). I am going to DisneyWorld with Mike's family the end of May/beginning of June. I've never been, but from what I hear, it's damn huge. Also for this time of year, my Orlando guide tells me it should be about 90 degrees outside. Mike and I have discussed the possibility of my needing a wheelchair maybe on one of the days, or something. I hate the idea. Heh. When we go, I'm going to be a stubborn pain in the butt and refuse unless it's ABSOLUTELY necessary. He hates that. Because he wants me to be able to enjoy the trip and not be out of breath / out of energy / or have sore hips/muscles. I know he only does it out of care and concern for me, and I'm not mad at him for suggesting it. I won't be mad at him if he talks me into it either. I just thoroughly hate the idea, and will avoid it at all costs.

May not be helpful, but Jarod's work story made me think of this and I figured I'd share. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

My boyfriend of about 3 years has CF and I see him fighting a constant struggle of what kind of attitude to have towards it. Usually he doesn't want to be treated differently and goes out of his way to avoid telling people, but on the other hand the disease affects his attitude towards life--he sometimes acts like he can do whatever he wants because "he's dying", even if what he does hurts other people. He struggles to be fully committed in a relationship, he thinks that is what he wants but he's so fixated on "making the most of life" he slips easily. I know this is probably a combination of personality and the diease, but it is an ongoing struggle.
-a

 

[anonymous]

I take my hat off to Jarod!! Living with Cf is a constant challenge to our daily existence. We do have to make our own decisions as to how we approach each day. Over the decades of my 'bad spells' I have always tried to live 'my' life doing what I feel is best for me. A person who does not suffer a debilitating illness is not aware of just how much effort we sometimes have to put into each day. We gain strength from our fighting spirit!

 

[anonymous]

<img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/wine.gif" border="0">
oops, I forgot to finish with my endings! Cheers.

 

[ej0820]

Hi there!

I have CF. What great questions! I never have gone to great lengths to hide it, but I have avoided telling many ppl...I'm not ashamed of it, but so many ppl just don't get it. I've told some ppl that take it to an extreme, to the point where, if I cough a little I get an, "OH ERIN!!! ARE YOU OKAY??!?" It's like, ok, thanks for the concern, but asking me if I'm ok after everytime I cough would be like me asking them if they were ok after everytime they said the word 'and'. Now that I'm older, I'm learning who to tell and how to tell them. I'm not as secretive about it, especially with being in college and having a roomie (I mean, how do you hide the vest anyway, lol). There are my moments of embarassment to when I'm in the middle of class and cough up somethin fierce and I can tell ppl around me are grossed out though.

I've been lucky with the friends I've had. In high school I had a friend who had asthma and surprisingly had some of the same problems I've had. She would always cough a lot and it would sometimes be way productive...we bonded over lung/phlegm jokes. lol. My other friends have also been around me for so long, that if I start coughing, it doesn't really phase them...I cough, they don't mind. I love that. Not that I want to be totally ignored, but if ppl stop and watch me cough until I'm done, I get nervous. There have been times where I've grabbed my inhaler, and a group of ppl just stood all around me, watching and waiting. It was like, "Guys...go away, I won't breathe easier with you staring at me. You're sucking my oxygen...I'll be fine in a minute." lol.

That was a long post, and I kinda forgot where all I wanted to go with it, lol. I hope some of that helps though
-erin
19/f/cf