Wednesday, April 27, 2011

So When Do We Tell Our Friends About CF?

Here is an email exchange between a reader and myself about the struggle of wondering when to introduce new friends to our Cystic Fibrosis:
i just realized something, ive made so many videos while i was in the hospital, and NONE of them were about cf...wow! i get so mad that theres no cf awareness in the world and i HAVE cf, and im not even doing anything about it, thats sad.
its just i dont wanna be know as the boy with cf, i wanna be know as casey the funny kid. ya know? so i never really thought about making cf videos or telling ppl ALL about cf. this is my strategy when i meet someone new;
i give them my name, and say a bunch of stuff to make them laugh, then talk to them for a few days after a few weeks were hangin out with other friends...THEN i tell them i have CF. i let them get to know me for me before i let them know i have cf, and ive realized the ppl i tell right away treat me WAY different from the ppl i tell later on.
i have no idea where i was going with this, BUT this is just something i've always went through, and i know from your "CF doesnt define me" blog, you do kinda the same thing.
Response:

Don't worry about being Mr. Awareness for CF, we all get comfortable at different rates. Here's the deal though, we're not contagious so people have no reason to fear us. Also, it's important that YOU explain YOUR CF to people and that they don't "google" it to find out what it is. If they do that they'll probably wonder why you're still alive :) People's reaction to CF is generally a reflection with how we feel about CF. If we seem scared, or sad, or make it a big deal, that's exactly what the people we tell will do. When I tell somebody about CF I usually downplay it a bit, but not to the point that they don't think it's a serious illness that need support. I often tell people that it's like I have pneumonia and asthma all of the time. Everybody knows exactly what those two things are so they can automatically kind of understand what I'm talking about. People are scared and react in different ways to the "unknown", just make sure your friends know what it is. If they don't support you in that, then why in the world would you want them as friends? Know what I mean?

Most people in my high school knew I had CF, but I was also the class clown. That's just me. People know us for our personality. CF is not a personality trait unless you make it one. If you act like a victim, or have a bad attitude, or are a secretive person, it is often because of CF that you are that way. Then, CF becomes part of your personality and that's what people know you as. Who would want to be around a person with all of those negative traits? I know I wouldn't. If you don't make CF part of your personality or let it affect you negatively emotionally, people will only know you as (name withheld). Sure people may know that you HAVE CF, but they won't think that you ARE CF. There is a HUGE difference. See, I HAVE CF, but CF doesn't HAVE me.

Here's what I do as far as when to tell somebody I have CF (and I know that I'll see them again). Generally speaking I have a pretty good "in" if me and that person are at the same table for dinner or something. Know what I do? I pull out the enzymes and set them right on the table. 9 out of 10 times I get the question "what are those?". Then I tell them what they are, what they're for, and why I take them. Then I tell them about CF, but here's the key, I tell them about MY CF. I don't recite statistics or the same jargon you can get on any website about CF. They're not interested in being friends with CF, they want to be friends with me. So I go into MY CF experience; how it affects me. I promise that they care more about that then all of the statistics that they'll forget anyway. But I'm very open about my CF and then encourage them to ask any questions if any ones ever come into their mind because as I tell them "I'm an open book".

I haven't noticed a difference in how people treat me as to whether I tell them right away or not. But I cough a lot so it usually comes up pretty close after meeting someone. Plus, I figure the more people that know about it, the easier time the generations after me will have with explaining CF. Everything to do with CF, from acceptance, research dollars, a cure, education, and involvement stems from awareness. The more aware people are of this disease, the better of a chance we have.

I hope all of that makes sense. Don't hesitate to email me again.
Do Life,

Ronnie

**Originally "aired" on July 16th, 2009**

10 people had something to say...:

Jonathan said...

Like you, I find that enzymes at meals out are a great ice breaker. Almost 100% of the time people ask what you are taking, or why so many.

I'm also with you on the "how you say it and not what you say" point. People around you take their cue from your demeanor. If you are (or look like you are) worried, people around you will start to worry, or vice versa. I typically take a very casual tone when I tell people I have CF, and I usually don't elaborate at all. If people want to know more they will ask, and with that, you give them the luxury of asking on their own terms when they are ready.

Although there's something to be said about being prudent with how much detail you give. I think some people get in trouble when they try and express themselves. For example, if I tried to tell you about a new found religion, you might be interested enough to smile and say "that's great," but you don't want hear me regurgitate the entire doctrine over lunch. In fact, giving too much information at the wrong time can be quite a turn off. (I'm not picking on the religious, I just used that as an example).

teresajmack said...

Thank you for your raw insight and humor. You are touching so many lives and bringing smiles to countless faces. Thank you from the @BEGirls (and baby 'BE' Rylan)

Jess said...

I usually do the enzymes as the ice-breaker too, how funny. I'm very open about my CF. I usually wait unitl I'm comfortable with the person, or friend and start with the enzymes and go from there. If they have questions I'm more than happy to answer them. I agree with not going into too much detail, but I'm more than happy to answer what they'd like to know. :)

Chrissy said...

I am usually open about my CF, but lately I have been embarassed by my health issues. I don't just have CF and my other issue is really complicated! I have been getting IV therapy 3 days a week now for a while, I have IV needle marks all over my arms. I also worry that I don't look sick. Weird, I know! Anyhow I just thought I'd pop in to let you know; I'm a reader!

chhunt said...

On the other hand there is me, who hardly speaks of CF. I work with about 80 people, I think 2 know. Even most of my friends don't know. I was not diagnosed until I was 18, so it is not something I grew up dealing with or talking about. Connenting with CF bloggers is really helping me and, in time, I will make steps to inform people about having CF. I am learning through my CF internet friends how being open about it could really help me in the long run. Either way, I think I will always be know as "the girl who always clears her throat!"

Anonymous said...

i never thought about that! the enzyme thing i'll try that next time, it sounds good!

and im pretty open about it too, i usually invite my friends into my room, where i give them the tour and show them all my meds, my pump, and my whole treatment setup.
i can handle the questions, its just when people try to jump to conclusions when asking me a question.
One guy thought my vest was an IRON LUNG, and argued with me about it for like 5 mins.
I hope your doing great and come out of the hospital 100x better!!
(casey jones)

Katey said...

I like the part where you said you tell them about YOUR CF and not statistics off the internet, etc. I never really thought of it that way, but I do the same thing. I don't recit any statistics....just sort of in my own words. And like Jonathan, if people want to know more and ask, then I'm more than happy to answer their questions. I'm very open and honest (more so now since transplant though).

In high school, people knew that I had CF or some pulmonary issues; but they "knew" me for my personality too and what type of student I was. I did cough all the time, but most people didn't pay much attention to it...which was nice.

I've never really tried the enzyme thing. I don't really hide taking them, but I have never just layed them out on the table... interesting!

Spencer said...

Most of the time I don't get to choose when I tell people about my CF, like you with the enzymes. Usually people ask if I'm sick because of my persistent and "overly productive" cough. Sometimes I'll downplay it and just say that I have a cold, if I don't really know that person. Otherwise, I will tell people that I have a lung disease that is pretty much like a cold that doesn't go away. It is interesting to see people's reactions once you tell them this. For some people, my response is sufficient enough. Others respond with a series of questions, in which I would tell them everything they want to know (in a nonchalant, no big deal tone of course).

Marisa said...

I basically do what Casey does. Especially in relationships with guys I go out with. I can't hide my cough, so when they ask about that I just tell them that I have asthma, or "something like asthma", (which isn't a lie since I do have an asthma component ;-)and that usually buys me some time for me to show them what I'm about and my personality. Like most of you, I want them to get to know ME, and then I tell them about CF and how it affects me. There have been times that I've met people who have been more interested and ask more questions so I end up telling them about my CF, and like Ronnie, I downplay it, but I still tend to get that "sick little puppy" look, and that then sets the tone of our relationship, so that EVERY time I see them, the first question is "How are you feeling?". That's what I don't like. It's sweet and their compassion is wonderful, but I don't want people to look at me and see CF, I want them to look at me as a strong, capable, witty girl that happens to have CF. For parents that have little ones with CF, as long as you're open, loving and supportive, your child will probably set the tone of how they want to be seen and treated with, regards to their health, when they reach school age. Ask them what they're comfortable with. I didn't tell anyone (aside from my best friends) in school and later I found out people thought of me as a shy girl. I'm not though, I was just always embarrassed because I had this horrible cough and not being open about it probably made it worse and left room for people to come up with their own conclusions as to why I looked healthy but sounded like a 90 yr old man coughing. Lol. If I could do it over again, I would have been more open about it.

Heidi Karn Barker said...

Yep, enzymes or insulin (for CFRD)are usually my ice-breakers, too. I agree with everyone in that my explanation of CF is how it relates to me, and that it can affect everyone differently.

However, I can't say I didn't adjust to certain situations because of CF - for instance, being one of many in an otherwise silent room, and my weezy or raspy breathing would be very noticeable. I would modify how I was breathing so that it wouldn't necessarily be heard (or least be so loud). Same with laughing - which always turned into a fight to breathe after a round of rough coughing. I'm not ashamed of this, because I was comfortable with it, but also because I think it was part of that brave front that so many people with CF put forward. I never wanted my friends or family to be worried, frightened, (or D. all of the above).

Just my two-cents worth! :)