Understanding.

[AbsintheSorrow]

I have a question for anyone who's involved or ever been involved with a non-CFer. Now, of course, no one who isn't a CFer can fully understand what's going on. That's a given. But the guy I'm with right now doesn't understand much of it. That's not to say that he doesn't understand that I'm sick, and I cough, and I'll die and good stuff like that. I mean more like he doesn't understand why and how I feel some of the things I feel. He understands as much as I can tell him, and he wants to understand more. He feels like a bad person sometimes for not understanding more thoroughly, and it's not like it's his fault for being healthy. I've been with non-CFers before who have, at least seemed to understand me better. I just want to know if anyone has had any similar problems with some people that didn't occur with other people. If you did, was there anything you did or said to these people? Anything that maybe helped them understand better, or allowed something to click in their heads?

 

[anonymous]

i have a problem with my partner and family not understanding, in a bad way, instead of a good way. when im sick i always get called lazy, slack and that i have a rotten attitude for not running a god damn marathon or something. it really annoys me. when they get a simple cold they are all treated, well, like they are sick! im 100 times sicker but i get called lazy over and over again. i can remember an incident where i had just come out of hospital, id just been diagnosed with diabetes and i was VERY sick. my partners parents were coming to stay with us so we needed to pick up the spare bed from my grandmas. because i couldnt help pick up a BED, my partner called me lazy to everyone he came across! they must think i have it easy or something, hah!

 

[anonymous]

I've let some people out of my life because they chose not to understand. However, those that do try to understand or at least willing to try I give them the benefit of the doubt. Try as the might, they of course can never full understand what goes on inside of us, physically as well as mentally. I always say to my boyfriend to take the cues from me, meaning if I am not well and know I am not, then act accordingly. I have never had anyone call me lazy, as the second post said, that has to be so hurtful. It isn't like we have a choice in this, no one knows what it is like to struggle for a breath, or have little energy to take a shower. I do therapy three times a day, and frankly coughing is exhausting. If my boyfriend said I was lazy, he be gone faster than I could count to ten. As for you, Emily, I guess as long as he wants to understand, keep trying to help him understand, but as you know he never really will until he has been with you for years. People can be married for years and still learn new things about their spouse. I think this works the same way, time is the only way for better understanding. I always wish I had magic words to help. Good luck. Sarah26 fw/cf

 

[AbsintheSorrow]

Yeah he always at least tries to understand. And he's very helpful and supportive. So I'll just keep trying hehe. And as far as the second post is concerned, I will comment on that too. Sarah, I agree with you, if someone called me lazy they'd have to have my shoe surgically removed from their ass. Seriously, Person Who Posted Second, you need to reevaluate these people in your life. There is a big difference between someone maybe not understanding firsthand hating cigarette smoke in public, or wanting to get married younger and someone calling you lazy when you're sick. These people don't seem to understand that you're not lazy, you're TERMINALLY ILL. That really kind of pisses me off. You shouldn't have to put up with this crap just because these people don't understand. There are people out there who will understand you better, and treat you with more respect, I guarentee. You need to either give these people a big fat reality check, or a boot in the ass.

 

[anonymous]

I think alot of people choose to kind of ignore that CF is a FATAL DISEASE. The way it comes across tends to be very cold. IT's hard to get people to understand "the right way" you don't want to be treated like a baby, but you want people to get why you feel a certian way. My boyfriend and I have these little arguments about children. We've been together 15 months, and are serious, he already has a seven year old from a previous relationship. It pisses me off when he says "You don't want kids" b/c that's not the case. I try to explain why I feel the way I do, and he cuts me off saying "either you want them or you don't, there's no in between". When you have a genetic disease, and your health is always crappy and you've been told all your life that you're going to die, you have different ideas about family. Sure, kids would be nice if I'm with some one that I'd like a family with; but I'm not going to spend my whole life wanting to be a mom because there's a real possibility that I won't be. It's not like we're engaged or anything, but we might have to tackle this some day. It's like he refuses to accept that I have REAL reasons for feeling that way. Debbie23 w/ CF

 

[anonymous]

I have just resently broken up with my boyfriend of 2 1/2 years. mainly for alot of things, but one of the reasons was because I didn't really feel the support from him and didn't think that he really understood me. I think he thought I was just sick and would evantually get over it. When I was sick and on home Iv's he would never touch me. He said that he was afraid of hurting me. But to me that is when I need the most love. When I would mention kids and wanting to have them before I am 30 just because I know that I am in good health now and not sure where I would be in my 30's, if i would be still alive or not, he would brush it off and say that I will be fine. One time he got mad at me because I would take off of work for not feeling good. That to me showed that he wasn't supportive and thinking about what is best for me. It took me awhile to relieze that I couldn't stay with someone like that. But I hope your situation will get better and that you boyfriend will come to understand you alittle bit better. I know that means alot. Sandy

 

[anonymous]

Have you ever considered taking him to one of your clinic visits with you? Have you ever had your centers CF Coordinator talk to him?

 

[AbsintheSorrow]

He's been to one clinic visit so far, and stayed the night in the hospital with me once. This also includes me being on home IV once, and washing my hair for me and stuff when my port was accessed. It's hard for me to explain... he understands all the medical details. He knows what causes it, he knows what goes on... one of the things we tend to argue about is smoking. He used to. He quit for me, and I give him sooo much credit for that, but he still doesn't understand why I hate it so much. And most of my hatred for it comes from the CF... he's said before knowing my friends and some of my extended family, I probably would've been a smoker had it not been for the CF. And I imagine he may very well be right. When I posted this, I just meant he doesn't understand some of my personal opinions and feelings that are caused by the CF. Thanks for continuing to post, guys. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

second poster here again! my partner is supportive of other things to do with my cf, except for when i cant do something normal people do. thats when i get called lazy. if he was down right no good then yeah, i would have got rid of him by now. come to think of it, being supportive in other areas in no excuse to call me lazy. i dont sit back and take it though, when him and my family call me lazy etc. i tell them right then and there how i feel. and deep down i know im the better person. people who are healthy find it so easy to call someone who cant do something lazy. they also feel that if they do something that requires strength/skill etc, that they have a right to blame the person who cant do the task. they will never know how it feels. my mum should also know better than to call me lazy, considering i have an older sibling who died from cf. but then again, i suspect that sometimes she actually compares me to him and thinks 'he was in such bad condition and she can still do some things normally. she's so lazy because she cant get out of bed today'. she must see me as the lucky one or something, and feels that i dont have a right to rest when im sick. debbie i completely agree that people refuse to believe its fatal. they think just because we look normal and can do basic things that we are fine!