Off Topic - Freedom of "Thought"

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abloedel

New member
All:

I'm one of the "late" CFF diganosed persons - just diagnosed a couple of months ago at the age of 36. Anyway, prior to this diagnosis, I have operated under the philosphy that "if you don't have anything nice to say, don't say anything" philosphy. Now post diagnosis, I find myself telling friends EXACTLY what's on my mind, much to their shock. It usually has to do with how stupid they're being in their relationships and how unhappy they are, and I'm finally telling them that life is too short...either find a way to be happy in your current situation or DO SOMETHING TO CHANGE IT.

I think what drew the majority of my friends to me to begin with is that they felt safe in talking with me, because I would just listen. But now their issues seem really stupid in the whole scheme of life and I find myself just wanting to smack them all.

I know I'm still very angry about my diagnosis, that it wasn't caught when I was a kid, but should have been, so I wonder if part of my attitude is feeding off of the anger that I'm feeling.

I guess being diagnosed with this has given me certain "liberties" shall we say, and I suddenly feel very free to express my thoughts, whatever they may be. I think I will lose some friends over this...but then, maybe they really weren't friends to begin with...

Anyway, I was just wondering if any of you have gone through this or for those of you who have known your whole life, how you've felt stuff like this? What has anyone done about it, if anything?

I really LOVE this site and feel like without it, I would be going off the deep end at the moment, so I just want to say how much I appreciate all of you!

Amy
36 w/CF
 
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anonymous

New member
i cant say i know how you feel. i am very thankful we caught my daughters cf at 2 months old. however, i do understand a life changing event in adulthood. i not only got married at 29 to a woman with 2 kids already but i am a burn survivor as well. at 24 i was in a car accident and was burned almost 40 percent of my body. between trying (although unsuccessfully) face reality and many drugs for pain, i didnt cope well. i shunned everyone even making my mother leave my hospital room crying on many occasions. adjusting took me a while and ALL the friends i had dissappeared, all because of my attitude. good things came though, i found new friends that honestly i became 10 times closer to because i learned the true value of friendship. life is short and it is what you make it. get angry, get mad, get irrate, get beside yourself, then cry your eyes out, look in the mirror and feel sorry for yourself. you need to do these things because they are part of a process you MUST take to get to the next level. after all this decide for yourself that you are going to be a better person because of it. if you believe in God then he will help you greatly, more than anything else. most importantly after doing all of those wild and crazy things, make yourself pick back off the floor and smile and go 110%. sometimes we are floored by what hits us square in the face but those are opportunities we must use to benefit ourselves. i made a saying for myself back in 1997 after i had been burned and saw the light at the end of the tunnel, "when people say, 'why do bad things happen to good people" i reply bad things only stay bad things when you do nothing with them or just hold on to them". i hope this was helpful. may god bless you abundantly.
Shane
daughter w/ cf 2 years old
 
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WinAce

New member
Actually, some things really do seem to have no redeeming value at all. The most that can be said about them is that, with some Herculean effort, they need not be as altogether horrendous as they would otherwise. But that's hardly a silver lining...

I know how you feel, Amy. Being blunt is so satisfying on occasion, especially when it involves replying to whining about the most trivial issues imaginable. But I've learned to be more diplomatic about it, if for no other reason than people get all defensive--and less likely to take your advice--when they feel you're brushing off their concerns. I don't necessarily want to lose friends over such issues, nor do I want them to ignore my good advice when I give it, so I usually take the time to couch my suggestions in the most neutral and non-hostile terms. Ultimately, I think that's the best approach, but your mileage may vary.
 
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anonymous

New member
Amy,
You have every right to be angry about never being diagnosed, and then being diagnosed and knowing that in that moment your whole life changed, thinking your friend's "problems" are petty...all of it.
I know it is much easier for me to have known I've had this disease my whole life than to get a diagnosis at 36. That would really rock my world.
One other view is...how would I have lived my life if I hadn't known I had this disease until I was 36, that would have been kind of cool and would have saved me some worry over the years. But then I assume that I wouldn't be as healthy today as I am if I hadn't known what I had all along and been treated for CF. Have I lost you yet? Sorry to be confusing, just contemplating.
But all in all, I think the early diagnosis is preferred, at least for me. And knowing that I have this disease has helped to shape me into the person that I am.
I am guessing that if you were just diagnosed that you have a mild case? If so, that is a plus for you. You'll feel so much better after being treated with the "right" medications and being treated for the correct condition, (i.e. not being treated for asthma, allergies, etc.)
Hang in there & try to eventually get past this anger if you can & expend that energy on taking the very best care of yourself that you can.
Please keep us posted on how you're doing.
Elle
 
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anonymous

New member
Yeah... i feel that way about people, too, but I don't vocalize it. Keep in mind that there's other people worse off than you who would think of your problems as pathetic. Not trying to be mean, of course. I complain about things all the time, pathetic or not. =-) If I really want my complaints to be listened to, then it's only right I'm patient with anyone else's complaining. (Even though I'm not always, but I try.)

Jarod
22 w/cf
 
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Emily65Roses

New member
There are some things that people complain about that annoy me to no end that I do sometimes vocalize about. Some stuff that isn't as big as CF like say asthma, I never say to people with the asthma. Sometimes I will say to a friend how it annoys me because it's hardly a life changing issue for most people. But I won't say this to the people who actually have asthma. Because it's all relative, and asthma is a REAL problem, even if it's small. Like Jarod said, there's always someone worse off.

The things that I usually make note to say out loud to people are problem that are quite simply NOT REAL PROBLEMS. Like "Oh my god Lisa wore the same shirt as me and Bobby talked to her for 5 minutes, oh my god I can't believe I have to take one pill a day to feel perfectly normal (say... alergy meds or something, but once the person takes the med, they feel PERFECTLY FINE)." Anything like that, I will often speak up, and tell them their problems are frickin stupid, and they need to OPEN UP THEIR EYES and pay the hell attention and stop whining about such useless stuff. If they stopped bitching about such non-problems, maybe they could enjoy the good things they have.

So some problems smaller than ours, though they do certainly annoy me, I will keep quiet about because though it's smaller, it's still a problem. It's the stuff that if you have any insight at all, you can tell it's NOT a real problem, that I tell the whiners about.
 
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anonymous

New member
Hi Amy,

I know exactly how you feel.

I have still not told alot of people about my diagnosis. Therefore, when people around me do complain about their life, it all seems so inconsequential. I still try to be nice, but at the same time I keep thinking how they would react if they had been put in our situation. My belief is that only another CFer can truly understand what we go though.

If you would like, you can e-mail me directly Dxat35@sympatico.ca.

Dxat35
 
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abloedel

New member
All - thanks so much for all of your responses and insights. There is just so much to deal with all of sudden and sometimes it all feels overwhelming.

Shane - wow - that you've been through so much and you still have maintained an incredible outlook! I am normally a very positive person, even in the face of adversity...just have a difficult time adjusting some days...but I'm sure I'll work through things, especially with the support of this group.

Winace - I'm finding being blunt is somewhat satisfying, but am working to temper that....and save it more for issues that really matter.

Elle - I have gone back and forth to the point of driving myself crazy on the knowing/not knowing issue...what would I have done differently, how would my life be, would knowing have shortened my life, etc. The doctors tell me I have a moderate case of CF, but based on my longevity and reading some of the histories of people on this and other sites, my CF sounds more mild in comparison. But it definitely should have been caught prior to now...I have had pneumonia mulitple times since about 8 years of age and other chronic respiratory illnesses, diagnosed with severe allergies/asthma, constant battle with keeping weight on, constant digestive problems, chronic sinus infections, and pretty much been told my illnesses were stress related or caused by my (former) smoking...don't ask me why I started smoking with chronic respiratory problems...couldn't tell you, but probably had lots to do with my parents and other family members smoking - all have quit now!

Jarod - thanks for the reminder that there are a great many people worse off than I...everytime I think about smaking someone, I'll try to remind myself of this!

Emily - Thanks for making me laugh...loved your bit about the "wearing the same shirt"...made me laugh out loud!

Dxat35...I know we've posted to each other several times...I will send you a separate e-mail in the next couple of days.

Thanks to all of you for your support and understanding!

Amy
36 w/CF
 
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thefrogprincess

New member
You have to find a middle ground Amy. I'm pretty blunt myself, but I never tell people they are stupid or whiny. Sure maybe their problems are pretty trivial to you but if they are coming to you with it, it is important to them. My friends come to me with problems because they know that I can usually offer a different view on the situation while being honest, but without alienating them.
 
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AGirlCanDream

New member
I just wanted to say that although I have Cf, and all the problems that come with it, I still complain about the little things sometimes as well. (Like oh my god she was wearing the same top as me!)
We have to remmeber other people DON'T have CF, so the things we find trivial, can be a big deal to them. I mean, when we whinge about our CF we're not thinking of the people worse off than us all the time are we?!
I'm not trying to have a go at anyone here, just saying what I think <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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AGirlCanDream

New member
I just wanted to say that although I have Cf, and all the problems that come with it, I still complain about the little things sometimes as well. (Like oh my god she was wearing the same top as me!)
We have to remmeber other people DON'T have CF, so the things we find trivial, can be a big deal to them. I mean, when we whinge about our CF we're not thinking of the people worse off than us all the time are we?!
I'm not trying to have a go at anyone here, just saying what I think <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
No offense but it sounds to me that since you now have such a huge problem on your hands your friends petty little problems mean nothing to you and you have no problem telling them so. Just because you now have a "disease" doesn't make your friends problems any less than yours. I understand it must be devestating to find out about this now but they are still your friends. Now if they are disregarding the fact that you now have Cf and don't seem to care, then yea, they aren't really your friends, but if they have problems at work or something and want to vent to you about it, you shouldn't make them feel like their problems mean nothing now!
 
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Emily65Roses

New member
I have one slightly random question. Why in the world did you feel the need to put the word "disease" in quotes like that? Last I checked, it was a disease, no quotes needed.
 
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anonymous

New member
To clear something up....

I am working on finding a middle ground. I know everyone's problems are totally relative to what's going on in your life. That being said, my original point was that I feel like knowing I have a disease that will ultimately kill me has given me certain "freedoms" that I haven't ordinarily experienced. I normally thought some of the issues raised by some of my friends were "trivial", I just never told them so. I feel I now have more freedom to be much more honest with my feelings. I'm working on not being so "brutal" about it though...:).

Amy

36 w/CF
 
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ChastensDad

New member
its been a while for a post so i hope this is read. if not oh well <img src="i/expressions/face-icon-small-smile.gif" border="0">

Amy i think youll do great i know it was alot to overcome but dont listen to anyone thats negative. whether its on this board or not. whether they have CF or not. i think you are already doing good and with time youll be back to your old self. even though your diagnosis was late now you can correct alot of the problems youve had to deal with. life should get easier and no one says this will kill you. there are 60 and 70 year olds with CF that even die because of other things unrelated to CF so dont give the death sentence (i know you arent but anyways) just go about with that extra knowledge. i have a great feeling about you so fight the fight and keep you head up
Shane
 
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perky79

New member
Stupid people piss me off....I am a political science major and on the debate team. Since college I have become very opinionated and intolerant of stupidity. I love to debate with my friends however i know they hate to debate with me. It's like beating up the physicaly disabled. I was diagnosed at the age of 2 years old. I'm not afraid of offending someone when they ask me what my opinion is. My biggest intolerance is to those who smoke..and the french lol. Your not alone amy.
 
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abloedel

New member
I have always (and feel I am ALMOST, but not quite yet again) been a positive person and have ALWAYS prided myself on NOT hurting other people's feelings....sometimes at the sake of hurting my own feelings by not expressing that my friend had upset me or being "afraid" to be honest because I might hurt my friend...horrible cycle, hard to get out of....I guess my "unofficial" motto has always been "let he who is without sin cast the first stone"....so a) I would LOVE to meet this person and b) I'm "normally" not judgemental and c) I for the moment wish I had a friend who also operated under this philosphy.

I think that I have spent my entire life supporting other people through their issues, and just wanted some "temporary" support to deal with the intial anger/sadness/shock of this...and wasn't getting what I felt I needed. I still don't feel like the immediate people in my life are supporting me in the way I would like, but I'm not angry about that aspect anymore...I know they are doing the best they can, plus I have all of YOU! I hope you all know what just being able to be honest means to me and helps me work through my feelings...even when you disagree with me!

Amy
36 w/ CF
 
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ChastensDad

New member
my "unofficial" motto has always been "let he who is without sin cast the first stone"....so a) I would LOVE to meet this person


who? just thought we all would like to know <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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