People take CF lightly

[Enzo2311]

So when someone asks me, 'What's CF?'. I really don't know how to explain it. I just say 'It's like a combination of Asthma and Diabetes but 20x more serious'. or anything similar to that. How do you explain CF?

I hate when people just brush off CF like its not big deal. When in reality, CF is just as bad as cancer. Actually, its worse. Cancer is curable, CF isn't. I also hate when people say 'Don't worry its going to get better'. On the inside, I want to yell at them cussing up a storm (I don't cuss by the way) saying 'iTS NOT GOING TO GET WORSE. ITS A PROGRESSIVE DISEASE MEANING IT DOESNT GET BETTER IT JUST GETS WORSE!!!!!' Then when I say the life expectancy is 37 1/2 they (for some stupid reason that pisses me off very much) say something like 'no one but God knows when you're going to die', what i WANT to say to that is "scientists and researchers didn't just make up this number, its a factual average of all the deaths of CFers averaged out. stop trying to sugar coat it for yourself." but what i actually say is "you're right only God knows" .

the way i explain CF, i assume, is the reason why its taken so lightly. But even when i give a true explanation of it its taken lightly. i feel like people look at me, and think 'oh he looks healthy, so cf must not be that big of a deal', but I'm the lucky few. there are so many others with cf who don't have any quality of life, and its as if they are completely discredited from their struggle.

 

[static]

While I am new to explaining it (personally I've only opened up to more people recently because I had to, hospital stays and all) I just tell it like it is, although I guess it also depends on who you are telling it to.

For example: To family- I don't sugar coat anything, I'm comfortable with them and they want to know what exactly is going on.
To friends- A little bit less than family, but I'm working on being more open with them too. Before I was very private, turns out the progressive part makes it so you can't do that when you get older. Questions are going to arise.
To work (albeit a bit easier for me since I work in a Health Field with co-workers who have their share of health challenges, )- I have CF. It causes extra sticky mucus to build up in the lungs which can increase risk of infection, more time off, exc.
To clients (If some explanation is needed, in my case because I was gone for so long)- Lung/breathing issues.

For me it is important to keep in mind why I am telling them. What do I expect to get out of it? Do you need anything from them? (understanding, support, guidance, exc.) Is this the best person to tell to get that support from? And lastly, and arguably most importantly, how will this affect them? If you already know the answer to that last question, it makes answering the first few questions easier.

I've opened up to a few people before and it made me act differently towards them than when they didn't know. Like, I expected them to go home, do research, find out everything about the disease and automatically "get it". I guess it goes back what are you expecting from them, if they can't give you what you feel you need then define a new role for them (Best friend, friend, acquaintance) and confide in someone who can.

 

[BreathinSteven]

Hey Enzo... I think a lot of us deal with people taking things lightly, or not understanding -- but I don't think that's abnormal. There are a lot of things I/we don't have a grasp on -- and we might take more lightly than we should because we're not impacted... People without a friend or loved one with CF have a more difficult time appreciating the full impact of our disease...

I too find amusement in the "don't worry, things will get better" comments. I sometimes cock my head to the side, like a confused dog, and ask, "do you understand the meaning of the word progressive???" And the people who say, "only God knows" when we're going to die -- or worse yet, "any of us could die tomorrow..." Yes -- I grasp the fact that any of us could step in front of a bus... They don't seem to grasp that, yes, we ALL have that chance -- but on top of all that, our deck has been stacked against us... And when they try to remind me that God knows, or God will take care of you -- I find it hard not to remind them that God screwed me over with this condition already, and we watch too many friends die -- so, frankly, I'm not going to count on the Big Guy to lend a hand here, I kinda gotta work this out myself...

When I had to quickly/briefly explain CF to a friend or acquaintance -- I usually went with the mucus side of things -- that a mechanism in our body causes us to have incredibly thick mucus and, instead of cleansing and lubricating our bodies, it gums things up. Instead of cleaning out our lungs, it turns our lungs into a culture dish that grows raging infections. The infections damage lung tissue irreparably. Our lung capacity spirals down over our shortened life spans and we effectively, slowly drown in our secretions.

I like what static implied -- the explanation also depends strongly on our audience... Certain people I'll go into detail, others I'll give them the lite version... And you're absolutely right -- our looks can be VERY deceiving... $hitty lungs aren't as obvious as two missing legs -- but just as crippling... Love, Steve

 

[Aboveallislove]

I agree with much of the above. The one thing I would add, though, is that people often don't know what to say and in their attempts to be compassionate, they often, say the wrong things, horribly so, sometimes. I can't mention the number of times I probably said something less than helpful to someone before our son was diagnosed with CF. Yes, I've gotten some painful responses, including more than once "enjoy him while you can," but I try to remember that they are doing the best they can, having never faced what parents or CFers face. Most people just have no idea how to be empathetic. What I try to do is thank someone when what they have done is helpful. So the mom who listens to me drone on about the upcoming research, using all the CF-jargon, I make sure when I've finished I say "thank you so much for listening. It really helps me when I can share the hope in the research."

 

[erock77]

I've had to explain many many times, it varies slightly based on how much details they want to know. But usually goes: "so you know how you have a thin slippery mucus lining in your lungs, it protects them from infection and particles. Well in CF it becomes thick and sticky and actually traps bacteria and breeds infection. So we're basically always fighting an infection and trying to cough it out" Or "it's kinda like bronchitis, except it doesn't go away." I tend to be the sugar-coater sometimes since I like to move past getting sympathy. I feel like family and friends dramatize it more than I do. I wouldn't say it's worse than cancer, just different. Cancer can kill people much quicker than CF.

That being said, most of my life I'm used to it and we do have the potential to feel decent. It's progressive, but so is the science. I've recently actually felt better than I've felt in maybe a decade, even though I have PA and MRSA. Just getting a good drug combo. Plus the meds in the pipeline could do wonders for us. I've started believing (at 37.5) that I could live to be old, like 60s. I don't have a mild case, I had a lobectomy when I was 11 and many hospitalizations, embolizations for heavy bleeding, but feel pretty good most of the time now (compared to my past).

Btw, I think the expectancy is 40 now in the US. However, it is just a statistic. Some die much younger, some die older. I say just take care of your health best you can, live your life and see where it goes. Btw, I think you should start cursing. It can be fun and relieving not to censor yourself so much.

 

[welshwitch]

I like your perspective, Eric! Good explanation.