I can't stand this anymore!!

nocode

New member
Why does everyone say "You are so strong!! I don't think i would be able to live with an ilness like that. You're really strong" !!!! I hate that more than anything. Where do they see this strenght if i feel like dying everyday!! If i hate life because of this stupid curse and will never have a normal life because i'm depressed because of this horrible fate! People say that they wouldn't probably be able to take this so do they just assume that it's better to be dead than to have this ilness?! I will never be able to relate to others, there's no point in creating ilusions, i'm not like them and they're not like me. I don't even have a bad case, my life can be lived completely normally, that stuff they say just brings me down.
Just needed to release this anger...
 

Scarlett81

New member
Well yeah you do need to release that anger-and it is frustrating.

Sometimes if people say that to me, and I'm really going through a hard time, and not doing well, I say, well yeah, it may seem that way-but actually I'm really not handling this well and could use a little more support. Sometimes people mean well but they don't know tilll you tell them.

The other thing that annoys me is: I was at the mall a few days ago, walking around with my PICC line. It was hot out so I had to wear a tank top and you could see the PICC just hanging there.

So this lady asks me-'girl what are you doing walking around with an iv??' And I said I have Cf and I give myself my meds with it. And this look of humanitarian pity comes on her face-and she grabs my hand and says-God bless you dear. Like I was a war widow at my husband's funeral. Then like an hour later-I'm in another store and the sales lady does the same thing. I say-blah blah, I have Cf. The same look comes over her face....and she says, "well I know all about CF, a very dear friend of mine had it, and she's dead now. So I wish you the best." ..................it's like-ok, thanks.

I know people mean well, but come on-how about POSITIVE reinforcment?
 

nocode

New member
Yes, you're right.The only explanation is that: they don't know that they're making it worse. Because sometimes these things come out of people who are really close to us and they must think it's doing us good. I know that all the people on this site are the only ones who totally understand this (and other people with other somewhat serious ilnesses). Am i still in denial of my situation? I prefer to think that i do dramatize my life ,but if people say that kind of stuff, maybe it is as bad as i paint it. Anyway,thanks for listening.
 

anonymous

New member
I do think people mean well. Not many people know very much about cf and they probably think its admirable to keep on trucking when you have an illness. I do. I don't have to deal with treatments all day or being sick. I'm not saying I couldn't, I know I would if I had to. So when I say people are strong (Mike for example), what I mean is, it sucks you have to do it, I wish you didn't, but you do an amazing job taking care of yourself and being positive. It's a fact he has more frustration during the day than me and he deals with it. I know you're venting and its frustrating but I guess its better than if no one aknowleged it at all? What's bulls*** is when people tell me I'm strong. I'm not the one who can't breathe.
Katy (at work)
 

Abby

New member
I was at a restaurant waiting for my friends to show up, I had some posters for Great Strides and my daughters picture on them. The waitress asked what they were for and I told her my daughter has cf and we are participating in a walk soon and working on some other fundraisers, etc. She said, "oh my friends son had cf, they die before they reach the age of 12, good luck" and walked away. I sat there with my mouth wide open for a few minutes, in shock that people could say such stupid things. When she came back I asked her when her friends son passed away and she said way back in the 70's. I set the story straight by informing her that many children in the past did die of cf, however, they've come a long way since then and my daughter should be able to live a relatively long life, maybe not an easy one, but meds are getting better every day and the median age rate is rising rapidly. She felt like a fool after that and continued to apologize.
 

Landy

New member
This reminds me of something that happened to me yesterday. I was at a doctor appt (not CF Dr) and I have had a cold so as everyone here can relate, I sound like an 80 year old w/ emphysema when I cough.
So I coughed a couple of times & the receptionist said "That sounds terrible, have you had that cough checked out?" To which I explain that I have CF, etc. She immediately gets this sympathetic voice and says, How sad. How old are you? Ohh, that's just too sad and went on & on & on.
I felt like she had one of my feet in the grave already. I told her that lung transplant can be an option if needed--basically to get her to shut up about the pity.
That's exactly why I didn't tell anyone I have CF until the last few years. I don't want their pity/sympathy & don't want to be known as "that girl/lady with CF" I am a person aside from CF.
But as others have mentioned, people don't know how to react & they are probably trying to be supportive/empathetic but don't realize how they come across.
I suppose it's like us relating to a friend that has just told us they have been diagnosed with terminal cancer. At least with me, I don't know exactly what to say, but at least I can relate to some degree about the shortening of life thoughts they are suddenly having.
Just my 2 cents worth.
 

Ratatosk

Administrator
Staff member
So often we get the "he doesn't look sick" comments about DS or comments about the medications and the treatments "that sounds like a lot of work" -- what choice to we have when it comes to DS. I just hate the looks of pity and one of the absolute worst people to treat DS like that is his grandmother.

My mom visits about once or twice a year and she just doesn't get it. She looks at DS with pity, talks to him like he's going to keel over. My mom has always been one of those peope who LOVES going to the doctor, loves the attention, loves talkig about her medications and tests she's undergone. Just wants so much to have something wrong with her and for DS to have CF, she just revels in the drama of it all. Like she's part of some afterschool special or something. And toward the end of her visits, DH and I are about ready to toss her out the door. Can't remember a visit where she hasn't burst into tears because "she's just trying to help and I'm being mean to her" Usually starts with something like we're abusing DS -- gets that church lady look on her face when DS acts up during meal times or CPT and we reprimand him. Which usually consists of "do you want to go in the corner" -- a time out. He's a toddler, he's a kid -- he KNOWS that when other people are around or he's in public, he might just be able to get away with more. It has nothing to do with CF. I just wish my own mother would just sit back and enjoy her grandson. Get down on the floor and play with him. Roll around in the grass, go to the playground. Instead she wants to review his medications, talk about articles she's read about cfers, complain about the CFF chapter in her town -- Don't get her started about how she volunteered for walk and felt she was snubbed 'cuz they didn't fawn all over her. Okay, done venting. Mom's coming to visit next month and I needed to get that out of my system.

Liza mom to a toddler wcf
 

anonymous

New member
I find the same thing happens very often to me as a CF parent. People always say "I don't know how you do it" I always say, "WHAT CHOICE DO WE HAVE?"
 

Emily65Roses

New member
I didn't read all the responses, so forgive me if I'm repeating. Quite frankly, I think it's ignorance. People don't know much of anything about CF unless they are medically educated (and even then, CF knowledge is questionable in some), or unless it affects them personally somehow.

When someone says "you're so strong" or any variant thereof, I always respond with, "Well, it's all I've ever known. Sh*t happens. You think it's hard because it's unusual to you, but if you were born with it, you'd do as well as me" etc etc.

Keep in mind also when you say CF, and explain anything about it... for one, it "sounds serious." Cystic fibrosis sounds kind of scary and evil. It is, but hell. For those who DO know anything about it, usually they know the brief dim parts... life expectancy, etc. So it's a shocker, and people <i>never</i> know how to respond in those situations. I always try to explain with a laugh, or make a joke, so it calms them down. Generally, if you explain it lightheartedly (but be truthful, of course), they see you can handle it. Therefore they are better able to handle responding. It's kind of like they take cues from you. If you get quiet and don't know what to say, they won't either.

As someone else said, it's often out of lack for something better to say. Same reason we often get "Oh, I'm sorry" Or "Oh, that really sucks". It's just all they can come up with. And that's okay. Karen, I believe, also mentioned, they think it's a compliment. So as much as we may find it annoying, keep the intentions in mind, because it's generally meant well. Kind of like little old ladies who offer you cough drops. They may be annoying, because we get it often, but you smile and say no thank you, maybe give a brief explanation, maybe not.
 

debs2girls

New member
Liza, you must be my long lost sister in law cause you are talking about my mil....lol..
I hate all that too....even at her cf clinic...they put her in a room on the other side, the one's for asthma...when I tell her dd is there for a routine (cf is anything but routine, so why do they call it that?) checkup..she says for what....I say cf...she (the nurse) says...she dont look that sick to me....well I didnt ask her for one thing and for another...she had dd's chart in her hand, shouldnt she see what she is there for before she decides what side of the clinic she needs to be on?
I am not too keen on her clinic today.......I need to vent very badly...another time and place I guess
 

anonymous

New member
I was just reading this site and from what i read it seams to me that leating other people know that you have CF is not such a good idea. Do you think that is better to keep it to your self? or Do you think that only the family members sould now about it? I have a 12 months old baby with CF and for a long time I did not wanted to leat any one know about him having CF not even my family because i wanted them to treat my son as a normal child not like a sick one. right know my family knows about him having Cf but not our closeast friends and iam still thinking if is a good idea to leat them know or to just not tell them at all.
Mom to Marcos w/CF
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I was just reading this site and from what i read it seams to me that leating other people know that you have CF is not such a good idea. Do you think that is better to keep it to your self? or Do you think that only the family members sould now about it? I have a 12 months old baby with CF and for a long time I did not wanted to leat any one know about him having CF not even my family because i wanted them to treat my son as a normal child not like a sick one. right know my family knows about him having Cf but not our closeast friends and iam still thinking if is a good idea to leat them know or to just not tell them at all.

Mom to Marcos w/CF</end quote></div>

Hi, my daughter is 2 years old and we have only told family members. We don't feel the need to tell anyone else at the moment. Obviously when she starts school things will slowly start to change cos we'll need to tell the teachers, etc.

PS when did you tell your family members about your son having CF?

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
 

anonymous

New member
Yes, people believe we are strong and amazed we do what we do to live but honestly for me I am comfortable in my own disease. If you could trade someone for any other major disease would you? I wouldn't. It is scary and terrifying but everyone has their own challenges and hurtles to overcome. This is just one of ours.

For most of my life I have not told people I had CF. Not unless I had to. I hated those looks from adults and from fellow classmates they treated me as if I was contagious. True friends were hard to find. Now as an adult with CF I can't hide it like I did before. Being on oxygen at 29 makes everyone stair. It annoys me when it is the adults. The children are easy to forgive because they have never been taught not to. I love it now when a little one gets brave enough to ask why I have this thing on my face. I simply tell them that my lungs have "buggies" in them that make it hard for me to breath and this tube helps me breath better by giving me extra air. They always smile and say "oh" and run off to play. I visit my daughters Kindergarten class sometimes and at first the kids all wanted to know why I was different but now they don't even notice it. Maybe if we can teach the children that everyone is different and that we shouldn't be pitied one day the world will be full of more accepting people.

Katie
 

Emily65Roses

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

I was just reading this site and from what i read it seams to me that leating other people know that you have CF is not such a good idea. Do you think that is better to keep it to your self? or Do you think that only the family members sould now about it? I have a 12 months old baby with CF and for a long time I did not wanted to leat any one know about him having CF not even my family because i wanted them to treat my son as a normal child not like a sick one. right know my family knows about him having Cf but not our closeast friends and iam still thinking if is a good idea to leat them know or to just not tell them at all.

Mom to Marcos w/CF</end quote></div>

If people ask, or the opportunity arises, I tell them. I was a poster child for the CFF Connecticut chapter until I was about 7 or 8, so I've always told people.
Plain and simple for me: No reason to be ashamed. It's part of who I am. So if you know me at all, you have to know that part.

I'm curious, Marcos' Mom, tell me... <div class="FTQUOTE"><begin quote>it seams to me that leating other people know that you have CF is not such a good idea.</end quote></div>
Why?
 

anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>

Plain and simple for me: No reason to be ashamed. It's part of who I am. So if you know me at all, you have to know that part.
q]


Okay, at this point I have to pipe in for those of us that tend to keep it to oursleves. There is a huge difference between being "ashamed" and being a generally "Private person". I don't think you mean anything by that Emily, I just get tired of people making the assumption that since we are not shouting it out to every Tom, ***** and Jane, that we are ashamed.

Personally, I find it exhausting to explain it to everyone and they usually don't get it anyway and half the time didn't really care when they asked. So i try to be selective about who I tell, and when I decide to tell them i make the time to explain it as in depth as possible, fielding questions and dealing with reactions This can also be emotionally exhausting..another reason I don't do this with everyone. It's a persaonility thing, not a Shame issue.

At least not for everyone who keeps it to themselves...

Littledebbie...not logged in.
 

anonymous

New member
Ahhh haaa haaa I forgot about the word issue I should have said Richard...my bad <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
I agree with you littledebbie on that one. For instance, I was at a restaurant the other day, coughed, the waiter asked if I was getting over a cold, yup. I am. I am not going to get into it with a waiter that really doesn't care or need to here it. Anyway, just my tidbit. I agree with Emily about saying well if you had it you would deal just like me. Very true.

Emilee
 

Ratatosk

Administrator
Staff member
Sometimes, depending upon who asks and how they ask, are you ever just tempted to say something to really shock them for being so rude or inconsiderate? I assume that most people mean well and are concerned, but sometimes....
 

Emily65Roses

New member
Ahh Debbie, the way the question was asked, to me implied shame. The way she said it was like "Isn't it not a good idea to tell people?" like it creates a problem. People who are private in general, or get sick of explaining is a whole different story.
 

Emily65Roses

New member
As far as people who are outright rude... I do say rude stuff. Mike was talking to a cop when he got arrested (I know, I know)... They started talking about money, and Mike mentioned saving for his girlfriend's engagement ring. The cop asked him "Aren't you a little young?" Mike said "Oh well, there are special circumstances." The cop said "*attitude* What?!?! Did you get her pregnant?!?" And Mike was like "NO SHE'S DYING!!!!" lol
 
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