Friday, June 19, 2009

Please Take My New Poll!!

So I've had a couple debates on what to call the general CF population, so I am wondering what term is best. I understand that none of us are defined by CF and if you have read my blog at all you know that I don't let CF define me. With that said, I still have CF, and so do 70,000 people in this world. When you refer to friends of yours with CF, what terms do you use? What do your doctors say when referring to you? I know for me, I have heard them refer to us as both Cystics and CFers. I for one don't care what the term is and as you can tell I don't get in the least bit offended. I gave myself the name Sickboy for goodness sake. Now you tell me, do I act like I have a helpless attitude because others refer to me as Sickboy? The more people that have CF on the tip of their tongue the better. If they think of me and then think of CF, great! Now I hope they get involved and they give to the CFF! Awareness is key to this disease and the more comfortable we are with a "label", the more comfortable other people will be with Cystic Fibrosis in general. Often, the general population's view of CF is a direct reflection of ours.

Just my two cents. Would love to hear your thoughts and see the poll results.

Thanks.

14 people had something to say...:

OceanDesert said...

I probably use 'Cyster' the most! :) But sometimes use CFer too... I think I'll stop using the CFer term just cuz as I was reading your post and I've thought of this before... What other diseases do we call those 'with' it?... I can't think of many?! ... a Cancer'er?... A Depressed'er... an MS'er? ...an IBS'er...a Diabetic?.. ok, there's one!

How about....a person who happens to be experiencing CF? :) or I've seen some abbreviations PWCF (person with CF)... yeah.. that's the one I dig...

RunSickboyRun.com said...

Thanks for the input! You had me laughing out loud! I have another one (or two) Asthma=Asthmatic Rabies=Rabid Anemia=Anemic...I'm just trying to figure out the best and least offensive term. Problem is I'm not offended by anything. CysticLife or referring to me as a cystic or CFer actually makes me kind of proud. But then again, I'm strange :)

Ronnie

Princess Talana said...

After reading that thread (ugh I hate going to that site, but that's another issue for another day), it seems to me that people who don't like the terms, for the most part, think that if they are used about them, they are being defined by their CF and only their CF.

Honestly, I think of it as something completely different. If you are willing to use CFer or Cystic in this "politically correct I can't hurt anyone" society, then to me it shows that you are comfortable with the disease and the person and see it as only a part of them... an important part, but certainly not something that defines them. Probably a small subgroup that uses it just because they are a**es, but you can weed those out by far more things then just saying cystic.
And also the people that get super offended about the "label" and correct people, I think they do more harm then good. If they get offended, or ask someone to use different terminology, it adds shame to talking about the condition and closes down a line of communication that was open.

Katelyn said...

Cfer all the way!

Alexandria said...

I like the term CFer the most, the people at my clinic refer to us at CF patients. Just like you I'm not offended by anything. It really does makes me proud to say I'm a CFer! I wouldn't be who I am today if I wasn't dx with it. Also I've met so many people that truely mean so much to me through CF, and I've met people who inspire me as well, just like you. =)

Graciy said...

I like to think my Joshy is only a CF patient when he is at clinic or in the hospital. He could care less but for some reason I just don't like that term.

I use CFer because it feel funny in my mouth but I'm not sure if that is a good enough reason...

Cystic sure sounds pretty though..kind of like mistic

Okay i'm done :)

NoExcuses said...

My vote - people are overly sensitive and you'll never get a consensus. :)

but i use CFer's because it's the shortest to type

niki36 said...

I usually say CFer, but now that I am blogging and have seen people use cyster, I really like it. Very clever haha.

Anyway, I also wanted to say that I've checked out your blog and you are very inspiring. I hope to start exercising more and would love to run a mile. Glad I found your page!

Your Cyster ;)
Niki

dbtoo said...

I much prefer mutant for myself! - dbtoo

Cystic Gal said...

I think it's a regional thing, too. I had never heard someone say...I mean type, the word Cystic as a personal noun, as in "Are you a Cystic?" until you wrote that to me. It didn't offend me, I just had never heard it. I also think one choice (CFer) is a social word, and the other (CF Patient) is a clinical word. I wouldn't want me own doctor, for example, to sit down and say, "One thing about CFers..." I would be like WTF?

dbtoo said...

I much prefer to be called mutant. But if I have to choose, cystic works. Ronboy, want to meet for lunch one day? I'm over in mesa, but my job (when I drive in) is in snottsdale. pm me at cysticfibrosis.com -dbtoo

Katey said...

I probably use "CFer" more than anything. Or rather, "CF patient." I really have never used "cystic." I personally call my "cf friends" by their name, and then maybe just add in a phrase that says that they have CF (if it's necessary). I think "CFer" sounds cooler...if that makes a difference? Truthfully, like you, I don't really care. Depending on that person's opinion, they may be offended by certain terms. It doesn't really bother me, but I would definitely rather less offend someone if they prefer one term over the other??

Somer Love said...

Cysters for all my CF sisters and

Fibros for all my CF bros

or Cfer

to me Cystic Kinda sounds sickely or something.

Amanda Faye said...

I have always used Cfers, Nick and I just came back From Sunny Shores Sea Camp where it is mostly people with CF and that is what everyone said there..