I've been reading a lot of people on the this site and others talking about having friends with cystic fibrosis. I just turned 30 and have CF, but have never actually been acquainted with anyone who has the disease. Given the high risk of cross infection, it has always been something I avoided. In fact, the only times I can be sure of encountering others with cf have been in the clinic waiting room or many years ago (20+ in fact) when I would attend cf Christmas parties.Anyways, just curious how others in the cf community are fostering relationships with other cf'ers.Tanya 30 w/cf, diabetes
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Friends with CF?
- Thread starter anonymous
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AbsintheSorrow
New member
I've made a lot of online internet CF chatting buddies. That's a good way. *shrug*
AbsintheSorrow
New member
LOL KYLIE!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
I must say that it is nice having this site to chat with people who have CF and have dealt with similar issues. But as far as being friends with others in my town who have CF, I haven't been. I guess I have always felt that I was doing so well I didn't want to sit and chat with those who aren't doing as well and feel bad because I feel better. I also felt like I didn't want a raving session of how it sucks to have CF, but yet at the same time CFer's are the only ones who understand, because as much as family members and friends try to understand, they just can't. I guess I feel if I don't live with CF on my mind all the time or don't chat about it all the time, I feel somewhat like a normal person - except for those thousand times throughout the day that I cough, and do my therapy. Anyway, I don't think I am worse off because I don't have close CF friends. And when I do get bugged I can come here and vent and people will read and say, ah, yes, I know what she means or they might think I am a fruitloop, in any case I can feel better because I ranted, but yet walk away and be as normal as I choose to be.
Thanks for the replies everyone. Sarah, I have felt as you do in my desire to maintain as normal a life as possible. However, sometimes I wonder if I would find comfort in having a close friend with the disease. I got married last year and when trying to decide who to have in my wedding party, realized how strange it was that I don't have friends I talk to often about what I go through with my disease. I have always felt like there are more interesting things to talk about, like how work is going, or who it is they're dating these days, etc. Anyways, for the first time it really struck me as strange that I don't often talk about something that has such an impact on my daily life and future.Anybody else have thoughts about the importance of relating to others with the disease?Tanya 30 w/cf and cfrd
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EmilysFriend
Guest
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>Some of the people, I dunno how many but some, are non-CFers who just have CF friends. I am one of those people. Basically just here to gather info about CF and what it entails and how to deal with it so I can be a better friend.<hr></blockquote>Given my nifty username (the idea for which I TOTALLY stole from Emily's totally fabulous mommy <img src="i/expressions/face-icon-small-happy.gif" border="0"> LOL), I guess it's no mystery that I have a friend with CF. I am a non-CFer, also, who joined this forum because I want to learn about CF from the people who actually have to live with it, not just from a clinical standpoint. The more I learn about CF, the more I realize just how "individualized" each case is in terms of overall severity and what does and does not help with symptoms. I happen to be a Biology major in college, so that helps a lot in terms of my ability to understand the medical aspects of the disease, especially when it rears its ugly little head in Emily's symptoms. I would love to be able to talk to another non-CFer like me, who is friends with someone with CF. Does anyone else get these damn pangs of emotion that seem to BLINDSIDE you out of nowhere, making you randomly FREAK OUT about the fact that your friend has a terminal disease that, not only all-but-guarantees that they will die young, but forces them to suffer exponentially as they get older? I really didn't intend this reply to be nearly as depressing as I know it must sound to all of you who are reading this. I guess I just got to thinking about how, quite frankly, pissed off it makes me to know that an amazing person like Emily (and the other CFers who post on this site) is forced to suffer SO NEEDLESSLY. Em seems to have a particularly vicious case from what I can tell (Em, I'm so sorry if this upsets you, but it's just my personal opinion), but no matter how you cut it, CF is a nasty disease that no one should have to suffer on any level. It's enough to make a Biologist and CF friend blue in the face!!!!!! Anyway, I've been very long-winded with this post, so I'll close with a final plea for advice/contact info from a friend of a CFer... ~Katie20, non-CFer, friend of Emily
I have a twin brother with CF. I knew somebody who has CF, he was not really a friend I just used to see the guy around and I was never worried about going up to talk to the guy or anything like that, I think this cross contamination thing is blown way out of proportion. If people with CF are not supposed to be near each other, then you are telling me that I can't go and visit my brother, bull crap. My doctor's have never told me that I can't be near another person with CF. Dave 29 w/cf
Katie, like you I do not have CF but joined this forum to learn more about the disease from more personals point of views. The only person I know with Cf is my boyfriend. I know what you mean by those pangs of emotions that just show up unexpected, I keep telling myself i can't do anything about him being sick expect be by his side when he's not doing well, but I can't help feeling useless and helpless. Some times are harder than others but I find it gets better, I think that I'm starting to accept the fact that I can't really DO anything about it. Amelie
Dave, I'm merely talking about "best practices" when trying to prevent the spread of infections. If you are near someone with cf that is culturing a different bug than you, there is a risk of cross infection. For example, I am not able to go to some cf functions because I cultured cepacia over 10 years ago. I can't imagine any doctor asking you not to see you brother, I would be prone to ignore any advice that would, but you may want to learn more about how to protect yourself against cross-infection if you get to know others in the cf community. Anyways, I may be off base, but that is my understanding.Tanya
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EmilysFriend
Guest
Amelie, Thanks so much for responding to my post. I hadn't really thought of it in that way before <img src="i/expressions/light.gif" border="0"> Although, at this moment, my mind is having trouble distinguishing between "giving in" (to the CF) and coming to a healthy level of acceptance of my limitations as "friend", you've helped me to realize that this is probably the best thing I can do for Em. Thanks! ~Katie**Just as an aside: My friendship with Emily goes WAY beyond anything having to do with her CF. I just don't want it to sound like I treat her any differently because she's sick, or that I'm constantly thinking about the injusticies of CF while we're hanging out. Nothing could be further from the truth. It's just that sometimes I get to thinking about things, and I need a place to vent where people might actually understand what I'm going through.
AbsintheSorrow
New member
Katie's so funny. lol. None of it offended or upset me Katie, you should know now that it's very difficult to offfend me. Uhm, what else? Oh yeah, my case. It seems more vicious to healthy people because they don't deal with it, but as far as a 20 year old with CF goes, I'm actually doing pretty well. I mean if you compare to other CFers, I'm well. If you compare to you or friends and family, I suck. But that's natural. Hahaha. But anyway, I'm glad this forum helps you and I'm sorry my friendship comes with a side of blindsided freaking out. Heheheee. <img src="i/expressions/face-icon-small-wink.gif" border="0"><img src="i/expressions/rose.gif" border="0">
kylie,i am from perth and i think you're a freak for thinking we're all freaks.i have friends with cf and i know that at times they are a great support because there are things i can tell them that nobody else can understand. it does make it very difficult with the cross infection rules but i guess thats why there are sites like this.might see you at clinic one day kylie <img src="i/expressions/face-icon-small-wink.gif" border="0"> im sure not everyone from perth is strange!!"normal" girl from perth wa
my best friends don't have cf, but i have friends who do and they are invaluable. and having friends with cf isn't even so much talking about cf its about NOT having to explain things. its being able to call them and say how you feel and know that they can understand and won't judge you. since cross contamination has been about i have found it so difficult, being in hospital and not being able to visit my "fellow cf'ers". i love all my friends, non cf and cf included, but i know that without my friends who have cf i would find things a lot more difficult.
oh whos that! are you really from perth? you might be one of the handful of goodies i mentioned lol. but dont you agree, perth people in general are strange? even i think we are strange compared to people who come from other parts of australia and wa. i dont think you will be seeing me at clinic. i get outside appointments. i find the clinics to be rather jumbled and hectic.so tell me who you are mystery normal perth girl! <img src="i/expressions/face-icon-small-smile.gif" border="0">