How do you avoid the pity party when you tell people you have CF?

[Cale Gilley]

So I've been thinking about this a lot lately and I'm so sick of the pity I get when I tell people I have Cystic Fibrosis. I'm pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can't just come keep them company and then I say I can't be around the smoke. They ask why and then after I explain it in comes the pity... Just wondering if anyone has any thoughts or ways around this.

 

[static]

The way that I handled it was just not to tell anyone, ever. Of course then it can come across as I'm lazy or disrespectful depending on the circumstances.

I am still very careful who I tell but I figure if I'm going to spend a lot of time with them I'd rather them pity me than think those other things. At least pity is a way to show they care.

Guess it also depends on why you told them. In the smoking case you described if it were me I would of probably just told them I had asthma, much more common and you can avoid the danger without offending them if that's what you're going for.

That's what works for me, hope it helped.

 

[Dank]

I've just stuck with either "I have shitty lungs" or "I have bad asthma" and people usually get it. People who are close to me understand that I have CF, not really what it is though. It's tough. I had to explain to a client once about some pancreas issues I was dealing with and he kinda was just taken back. I am fortune enough with my lung function that I can pretend in most circumstances (except the coughing) that I'm "normal", so it always throws people off when I'm really sick. Try not to let it bother you

 

[Ratatosk]

DS has gotten a couple comments/questions on his surgical scar from his two bowel obstructions, which we forget is even there. Last winter it was from someone who saw it and asked if he'd spent time in a nicu -- his twins were preemies and he must've seen something similar, but a few years ago we were at a graduation party at the lake and a stranger looked at ds and said "oh, did you have your appendix out". DS said not understanding thinking she meant his intestines "they took it out and put it back in and then it came back and they had to do it again." So this woman tries to argue with him, that he was incorrect. Yeah, argue with a 6 year old about his health experiences.

 

[Simba15]

So I've been thinking about this a lot lately and I'm so sick of the pity I get when I tell people I have Cystic Fibrosis. I'm pretty outgoing and I go to bars and meet people all the time and people who smoke always ask if I want come join them outside while they smoke and I say no. Of course they ask why I can't just come keep them company and then I say I can't be around the smoke. They ask why and then after I explain it in comes the pity... Just wondering if anyone has any thoughts or ways around this.

Everyone I have told does not even know what it is. I have gotten very little support from anyone let alone a pity party. They act like "oh yeah whatever." Except for a former employer who pushed me out due to my dx.

 

[beautifulsoul]

Everyone I have told does not even know what it is.

ditto. I can sum it up in less than a minute and add that I had a lung transplant and all people say with widened eyes is "oh wow!" I swear some people probably don't even know what a lung transplant is but I really do not care what people think. Good or bad. It is what it is. I live my life. You live yours. Nice to meet you and see ya.

Ratatosk - People can be so ignorant!

 

[Allansarmy]

I am probably going to get the "You just don't get how we feel" in this thread. I have the different perspective coming from the parent point if view. My son was Dx at 4 months old. He is 19 now. He is much like the others that post here. He just doesn't talk about it. I can't say I blame him as well. Most people just do not get it. So the rule is a if they don't ask we don't tell. You see the parents also do not want a pity party. I am so sick of all "Oh I am so sorry" and If I hear one more time about how one of thier friends niece had CF but passed away...... oh make me puke. Don't want to hear that....why do they say stuff like that? Are they trying to fill that awkward silence?

 

[2005CFmom]

My daughter is very private about her CF. Her close friends know (and I'm sure others do to), but if someone questions why she is doing something she will rarely say, "because I have CF". If they ask why she is taking pills when she eats, she tells them it is to help digest her food. Or if they ask about breathing treatments she tells them she needs help clearing mucus out of her lungs. Most people don't need to know she has CF, and they wouldn't even know what it meant if she told them. Yeah, I know... CF awareness. But who can blame her flying under the radar. She hates being the center of attention, and would hate being pitied.

So instead of saying CF, just tell them that smoke irritates your lungs.

 

[kenna2]

I usually respond with " I'm allergic to cigarette smoke"....if they ask why I make light of the fact that I have CF by saying "I have CF which is a lung disease. It's ok though because (in my case because i'm super skinny) I can eat whatever I want and not get fat( Which is pretty much everyone's dream). You can call me fat and I take it as a compliment." Many of my friends (and 100% of the time guys will love this because they never get to call a woman fat) now when they see me always tell me how fat I look and it makes me laugh every time and I always say thank you.

 

[nmw0615]

I take a very different approach than previous posters. I never have tried to hide my illness, and I'm very upfront about it. I might vary in how detailed I get, but I don't try to hide CF. when I can see people start to pity me, I just tell them not to. My life does not deserve pity. Sympathy? Yes. Empathy? Yes. Pity? No. I know this doesn't stop some people, and I just let that go. Pity is how those people deal with tough situations. I can't change how other people react; I can only change myself. I don't like to be pitied, but I also understand that's how some people deal.

 

[Cale Gilley]

I guess a lot of it it my personality I don't lie or I guess better put "beat around the bush". I'm very blunt person I tell it how it is and I like that about myself, so I guess thats why it always come out. It would be hard to hide due to the fact I can't just go take a walk around the block because I'm physically unable or dance on the dance floor without getting severely winded. I guess there is just no way around it for me. its really odd how many people I do tell that know what it is though and yes if they done I can sum it up in a few short sentences. It sure does make dating hard being 26yr old and not being able to do so many activities, no one (lets be honest and i understand why) wants a sick person to fall in love with.

Good meeting yall too, talking to all of you and hearing what you have to say. I'm so glad I found and joined this site after 26 years of never talking to any other CF'er its nice to know there are people out there going through what your going through.

 

[imported_MaggieB]

I totally agree with the last poster. Tell everyone, limit the info to what you feel comfortable with, and don't be ashamed. CF is your thing, they have their things. Don't expect a pity party, but allow them to do what they have to do. Good luck!

 

[windex125]

I'm 60 and still say asthma just don't want to get into the whole explanation thing... most people just want to make sure that coughing is not going to give them something...

 

[Gentrygirl]

My son has CF, not me, so I can't say I am exactly in your shoes. I do see the pity party too, though, and I can empathize with how it must feel from your shoes. That being said, I've had my own journey with some other issues that I can somewhat equate it (worrying about the pity party) to, and my suggestion of what might help is yours to take or leave as you see fit- I won't be offended. Here it is: What other people think about you is none of your business. This boils down to you (me too!) kind of obsessing over what they think of you. Worrying over what someone else thinks of you gives them power over you that they didn't ask for and didn't take from you. You wrapped it up and handed it to them. OR, (and please don't think this is harsh- sometimes it's the quickest way to get past something you are worrying over) you are making yourself the center of a story that doesn't exist. You are telling yourself a story in your own head that never happened. On the other hand, if there is what seems a reaction from someone, I think sometimes people act over-sympathetic (not empathetic) because they don't really understand it or frankly care about it. They just don't want to seem insensitive. Probably after they come back from their smoke break they will have forgotten anything you said about it, because in reality they don't give a crap. Human nature, that's all. It's not that you aren't worth being empathetic towards, much less is CF worth being empathetic towards. On another note-Why would anyone deem these people worth telling lies to? "I have asthma...I'm allergic......I feel a cold coming on." I think the excuses are to save their feelings, and they frankly aren't worth it. If they can't handle the truth, that's not your problem. Or how about this: you don't have to freaking explain yourself to anyone at anytime. How about you just choose not to smoke. Period. You don't have to explain any life choice you make to any other person. You aren't accountable to them. No excuses. It boils down to this being about YOU, not THEM. It boils down to being about what you allow yourself to feel about what someone else may or may not be thinking, and who the hell gave them that power over you? So the next time you worry about a pity party, just don't. Remember-what someone else thinks of you is none of your business. You don't control what someone else thinks- you only have control over what you think. It's powerful. You may think it’s a stretch, but I think that will help in the dating area, too- the confidence, I mean. If you think of yourself as sickly and undateable, others get that vibe from you. If on the other hand, you realize and own what you have to offer and let that be the lead, then you’ll be set. CF doesn’t define what you are- you do that. It’s not the only thing that makes you what you are. My son seems to think he’s a rock star, and the girls line up for him. Now if only he would notice.


Sorry to dribble on- our therapy hour is over now. Thank you all for coming. Best of luck to you- sending you love.

 

[Renee Vasquez]

I'm also very open about it. If people try to pity, I always say don't worry I don't plan on dying anytime soon. And they kind of laugh, like no one really plans on dying..... I also bring up the very good point of, not that many cool things happen after 40 anyways, so I really don't think I'll be missing out on that much....grandkids maybe but that's about it.
Basically I make it a part of life I'm content with so if they react any other way then also content with it they seem like the weirdo. People often adapt to the tone you set. If you state something in a 'this sucks' kind of way, they will respond like it sucks. It's like when a friend tells you their pregnant...their tone tells you whether it is 'Yay! Your having a baby!' Or 'oh no....What're you gonna do?' .... So set the tone you want to.

 

[Aboveallislove]

When you celebrate your 60th, I want you to look back on all the great things that happened when you were in your 40s!

I'm also very open about it. If people try to pity, I always say don't worry I don't plan on dying anytime soon. And they kind of laugh, like no one really plans on dying..... I also bring up the very good point of, not that many cool things happen after 40 anyways, so I really don't think I'll be missing out on that much....grandkids maybe but that's about it.
Basically I make it a part of life I'm content with so if they react any other way then also content with it they seem like the weirdo. People often adapt to the tone you set. If you state something in a 'this sucks' kind of way, they will respond like it sucks. It's like when a friend tells you their pregnant...their tone tells you whether it is 'Yay! Your having a baby!' Or 'oh no....What're you gonna do?' .... So set the tone you want to.

 

[mamaScarlett]

I think most people see me living my life to my full, they don't feel the need to pity me and see that I don't have time for pity!
I hate pity. I do like understanding-but they are very different things.
In a situation like not being around smokers, I remind myself I'm not that different from many others who don't want to be around smokers. No pity needed, I just want to breathe clean air!

 

[Hardak]

I tend to be an open book about my CF. It mostly comes down to personal choice about how open to be. If I start to hear the pity party coming out I look at them and say its had its trade offs and I wouldn't wish it away if I could. That commonly ends that right there. When I was still working and the CF wasn't as big of an issue I told most employers simply to treat me as if I had really bad asthma. As IV antibiotic usage became more common I was a bit more up front about it. And had employers react in ways that well they every likely shouldn't have.

Allansarmy, They are trying to connect with you on an emotional level and simply lack the understanding of the situation to do so.

 

[benthyr123]

I take this opportunity to educate people. The more people that know and understand what CF is, the better. I'll admit that I didn't always do this, but I'm 51 now so I can say what I want. I have never gotten pity from anyone....I feel I've gotten respect for explaining my circumstances and my physical limitations.