Making up for CF

A

anonymous

New member
Hey Jenn,

I have felt this way alot. Like I am overcompensating in other areas that I am able to overcompensate in. For instance I always did well in school and worked extremely hard because it was one thing that I KNEW I could excel at despite not being able to do certain physical things.

I try to be fun and up lifting to people even when I don't want to be because I don't want to bring them down too. For me it is more of a "you can't do anything about it so why make a big deal over it" thing than anything though. I have always - up until recently - kept my feelings and fears about CF and my health to myself. NO ONE - not my parents, not Kurt, not my best friends ... NO ONE knew how terrified I was and no one really knew how sick I really was until this year when I finally said okay I have to stop hiding this. You will reach a point - GOD how I hope it doesn't happen anytime soon - but you will reach a point where even if you don't want to be open about things you will have no choice because of your health. It is very hard for me to tell people things even now because I have never been the type to just openly talk about CF and myself. Now I am at a point that it is obvious by my activities and abilities though and it is just easier to explain than have people stare at me lol.

<div class="FTQUOTE"><begin quote> Where does it say everyone on the planet has to like you?
~Debi</end quote></div>

Obviously you don't read Clauses ... it says that right below .... "life is fair" lol. Seriously though not everyone will like you and that is a good thing ... do you really want obnoxious people that you don't like to like you anyway lol.

I completely understand fearing that people will leave you I am afraid of the same thing. I am afraid everyday that something else happens that one day it will just be too much and the people in my life will say "umm ... okay well I could handle this before but now that you are .. blah blah blah .. I'm outta here!" I think that is a realistic fear for people because many people can not handle all the stuff that comes with something like CF ... or the other health issues you have going on. My thoughts on this though ... trust in your heart. If it feels right it feels right and be open to it. Share with people because then you will find out if the person is right or not. If you tell them about your issues and they leave it sucks, but at least you found out now before you REALLY needed someone to be there all the time. How much would that suck if you were with someone and you never told them the truth and were never open - who cares if THEY are happy with that - in that situation they are happy with not knowing all of you and that isn't right.

I hope you are able to sort through these feelings Jenn. I will say though that - being that I have had the same feelings even if you do sort through them they can still linger in the back of your mind. At least that is how it is for me at times.

I hope you have a wonderful Christmas.
Lindsey
 
D

Diane

New member
Im not sure if what i feel is the same as you, but ill put it out there anyway. My problem with cf isnt that i try to "make up for it", but it is getting harder to hide and thats something that bothers me. I lived my whole life as if it werent there, up until about almost 5 years ago when i had a massive hemoptysis. That completely changed everything . I find that i am more reluctant to go places or do things, i certainly have fear in me that was never existant before, and i seem to find every excuse to stay out of a relationship because i dont want to "put anyone thru that". I dont want anyone to see what i go thru, or how much i cough , or any of it !! I am such a closet cf'er......lol. But like i said it is getting harder and harder to hide. I am finally getting to the point where i have been telling people that i hadnt told before. I just miss the carefree days i had before everything bad happened.
 
D

Diane

New member
Im not sure if what i feel is the same as you, but ill put it out there anyway. My problem with cf isnt that i try to "make up for it", but it is getting harder to hide and thats something that bothers me. I lived my whole life as if it werent there, up until about almost 5 years ago when i had a massive hemoptysis. That completely changed everything . I find that i am more reluctant to go places or do things, i certainly have fear in me that was never existant before, and i seem to find every excuse to stay out of a relationship because i dont want to "put anyone thru that". I dont want anyone to see what i go thru, or how much i cough , or any of it !! I am such a closet cf'er......lol. But like i said it is getting harder and harder to hide. I am finally getting to the point where i have been telling people that i hadnt told before. I just miss the carefree days i had before everything bad happened.
 
D

Diane

New member
Im not sure if what i feel is the same as you, but ill put it out there anyway. My problem with cf isnt that i try to "make up for it", but it is getting harder to hide and thats something that bothers me. I lived my whole life as if it werent there, up until about almost 5 years ago when i had a massive hemoptysis. That completely changed everything . I find that i am more reluctant to go places or do things, i certainly have fear in me that was never existant before, and i seem to find every excuse to stay out of a relationship because i dont want to "put anyone thru that". I dont want anyone to see what i go thru, or how much i cough , or any of it !! I am such a closet cf'er......lol. But like i said it is getting harder and harder to hide. I am finally getting to the point where i have been telling people that i hadnt told before. I just miss the carefree days i had before everything bad happened.
 
M

MCGrad2006

Guest
I kinda have to agree with you Jenn. I let people walk all over me and take advantage of me, because I want to be liked by everyone. I dont want people to look at the CF and say thats what defines me...I want my niceness and my attitude to shine. Also, along the lines of what Diane was was saying..My CF is also getting harder to hide. I find though, that I since this has been happening, I am having more pride in my illness. I dont mind people knowing and seeing me weak. I still have some issues with that, like showing emotions and such, but it seems to be getting easier. I was always the kind of person who wanted my illness to be almost hidden away. I didnt want to be judged and biased towards that, but now that I am getting older, its easier to show. And Lndsey makes a good point to...I have always tried to hide my CF. So many people knew about it high school and when I was younger, so when I went to college, I was planning on doing that too. It didnt happen that way, but who cares...I have now learned that its ok to show it, most of the time anyway.

My friend Kathleen, who just passed away of CF last week, was a lot sicker than I am, I think her whole life. So it was different for her. When we met our freshman year of college, she made sure all of her friends knew we shouldnt be near each other (she told all of her friends about my CF). Back then, I was a lil upset about that, you know thats my place to tell who I want to tell. Now I realize that it doesnt matter so much. I kind of like people knowing(not that I want the sympathy), but just so they know. When I saw Kathleens boyfriend and best friend from college at the funeral, it made me realize how important I had been to her...and it reinforced my ideas of showing my disease to others. I was not ashamed to be there and to have known Kathleen solely because of the CF. I was proud that we had this CF-bond, and now that I can admit that (and not try and compensate as much by hiding my CF) is an eye opening experience.

<div class="FTQUOTE"><begin quote>I use to be a people pleaser, help out even when I truly didnt want to, let me people take advantage of me just because I was afraid or ashamed to say no. I use to push myself physically to prove things to myself more than others I think</end quote></div>

Oh my can I say that too?? <img src=""> I am so much like that. I just want people to think that I am normal or something. I dont know why I let people walk all over me...I wish I didnt, but I just dont want to speak up. That may have to do with the CF in that I want people to like me despite my illness...
 
M

MCGrad2006

Guest
I kinda have to agree with you Jenn. I let people walk all over me and take advantage of me, because I want to be liked by everyone. I dont want people to look at the CF and say thats what defines me...I want my niceness and my attitude to shine. Also, along the lines of what Diane was was saying..My CF is also getting harder to hide. I find though, that I since this has been happening, I am having more pride in my illness. I dont mind people knowing and seeing me weak. I still have some issues with that, like showing emotions and such, but it seems to be getting easier. I was always the kind of person who wanted my illness to be almost hidden away. I didnt want to be judged and biased towards that, but now that I am getting older, its easier to show. And Lndsey makes a good point to...I have always tried to hide my CF. So many people knew about it high school and when I was younger, so when I went to college, I was planning on doing that too. It didnt happen that way, but who cares...I have now learned that its ok to show it, most of the time anyway.

My friend Kathleen, who just passed away of CF last week, was a lot sicker than I am, I think her whole life. So it was different for her. When we met our freshman year of college, she made sure all of her friends knew we shouldnt be near each other (she told all of her friends about my CF). Back then, I was a lil upset about that, you know thats my place to tell who I want to tell. Now I realize that it doesnt matter so much. I kind of like people knowing(not that I want the sympathy), but just so they know. When I saw Kathleens boyfriend and best friend from college at the funeral, it made me realize how important I had been to her...and it reinforced my ideas of showing my disease to others. I was not ashamed to be there and to have known Kathleen solely because of the CF. I was proud that we had this CF-bond, and now that I can admit that (and not try and compensate as much by hiding my CF) is an eye opening experience.

<div class="FTQUOTE"><begin quote>I use to be a people pleaser, help out even when I truly didnt want to, let me people take advantage of me just because I was afraid or ashamed to say no. I use to push myself physically to prove things to myself more than others I think</end quote></div>

Oh my can I say that too?? <img src=""> I am so much like that. I just want people to think that I am normal or something. I dont know why I let people walk all over me...I wish I didnt, but I just dont want to speak up. That may have to do with the CF in that I want people to like me despite my illness...
 
M

MCGrad2006

Guest
I kinda have to agree with you Jenn. I let people walk all over me and take advantage of me, because I want to be liked by everyone. I dont want people to look at the CF and say thats what defines me...I want my niceness and my attitude to shine. Also, along the lines of what Diane was was saying..My CF is also getting harder to hide. I find though, that I since this has been happening, I am having more pride in my illness. I dont mind people knowing and seeing me weak. I still have some issues with that, like showing emotions and such, but it seems to be getting easier. I was always the kind of person who wanted my illness to be almost hidden away. I didnt want to be judged and biased towards that, but now that I am getting older, its easier to show. And Lndsey makes a good point to...I have always tried to hide my CF. So many people knew about it high school and when I was younger, so when I went to college, I was planning on doing that too. It didnt happen that way, but who cares...I have now learned that its ok to show it, most of the time anyway.

My friend Kathleen, who just passed away of CF last week, was a lot sicker than I am, I think her whole life. So it was different for her. When we met our freshman year of college, she made sure all of her friends knew we shouldnt be near each other (she told all of her friends about my CF). Back then, I was a lil upset about that, you know thats my place to tell who I want to tell. Now I realize that it doesnt matter so much. I kind of like people knowing(not that I want the sympathy), but just so they know. When I saw Kathleens boyfriend and best friend from college at the funeral, it made me realize how important I had been to her...and it reinforced my ideas of showing my disease to others. I was not ashamed to be there and to have known Kathleen solely because of the CF. I was proud that we had this CF-bond, and now that I can admit that (and not try and compensate as much by hiding my CF) is an eye opening experience.

<div class="FTQUOTE"><begin quote>I use to be a people pleaser, help out even when I truly didnt want to, let me people take advantage of me just because I was afraid or ashamed to say no. I use to push myself physically to prove things to myself more than others I think</end quote></div>

Oh my can I say that too?? <img src=""> I am so much like that. I just want people to think that I am normal or something. I dont know why I let people walk all over me...I wish I didnt, but I just dont want to speak up. That may have to do with the CF in that I want people to like me despite my illness...
 
J

JennifersHope

New member
Thanks for your replies guys... I don't know if I am saying what I really am trying to say... I do think it is two different issues.. One is for sure I am a people pleaser, and part of me doesn't even mind being one.. I love to make ppl feel happy and loved... and I like to bless other ppl, even if it is at my expense which happens a lot because when you are always putting someone else first, some ppl can take advantage of that.. and I still feel that I would rather be taken advantage of then to me a snot...and cold hearted.. but that is just me...though sometimes I feel like I am at the Mercy of other ppl not to take advantage of me, which is NOT GOOD.... and something I want to change...

The other issue I think is... I don't want to rely on anyone to take care of me or to be there for me... It isn't worth the disappointment and I can't stand the guilt of feeling like someone feels obligated to me.....I will give you better examples when I can, but the bottom line is ... I can't let go of the burden that I feel like I am and though I am told I am not, I am very high maintance and I am very reliant on ppl to help me when I am sick.. I can handle the physical stuff way more then the emotional need that I have when I am sick.. and I have a fear of letting go of what I have now, even if it is a wonderful chance for me in the future......


Sorry if I am confusing you, just trying to process something... well two somethings...

Thanks again for helping me process..

If you have any more thoughts.. let me know


Jennifer
 
J

JennifersHope

New member
Thanks for your replies guys... I don't know if I am saying what I really am trying to say... I do think it is two different issues.. One is for sure I am a people pleaser, and part of me doesn't even mind being one.. I love to make ppl feel happy and loved... and I like to bless other ppl, even if it is at my expense which happens a lot because when you are always putting someone else first, some ppl can take advantage of that.. and I still feel that I would rather be taken advantage of then to me a snot...and cold hearted.. but that is just me...though sometimes I feel like I am at the Mercy of other ppl not to take advantage of me, which is NOT GOOD.... and something I want to change...

The other issue I think is... I don't want to rely on anyone to take care of me or to be there for me... It isn't worth the disappointment and I can't stand the guilt of feeling like someone feels obligated to me.....I will give you better examples when I can, but the bottom line is ... I can't let go of the burden that I feel like I am and though I am told I am not, I am very high maintance and I am very reliant on ppl to help me when I am sick.. I can handle the physical stuff way more then the emotional need that I have when I am sick.. and I have a fear of letting go of what I have now, even if it is a wonderful chance for me in the future......


Sorry if I am confusing you, just trying to process something... well two somethings...

Thanks again for helping me process..

If you have any more thoughts.. let me know


Jennifer
 
J

JennifersHope

New member
Thanks for your replies guys... I don't know if I am saying what I really am trying to say... I do think it is two different issues.. One is for sure I am a people pleaser, and part of me doesn't even mind being one.. I love to make ppl feel happy and loved... and I like to bless other ppl, even if it is at my expense which happens a lot because when you are always putting someone else first, some ppl can take advantage of that.. and I still feel that I would rather be taken advantage of then to me a snot...and cold hearted.. but that is just me...though sometimes I feel like I am at the Mercy of other ppl not to take advantage of me, which is NOT GOOD.... and something I want to change...

The other issue I think is... I don't want to rely on anyone to take care of me or to be there for me... It isn't worth the disappointment and I can't stand the guilt of feeling like someone feels obligated to me.....I will give you better examples when I can, but the bottom line is ... I can't let go of the burden that I feel like I am and though I am told I am not, I am very high maintance and I am very reliant on ppl to help me when I am sick.. I can handle the physical stuff way more then the emotional need that I have when I am sick.. and I have a fear of letting go of what I have now, even if it is a wonderful chance for me in the future......


Sorry if I am confusing you, just trying to process something... well two somethings...

Thanks again for helping me process..

If you have any more thoughts.. let me know


Jennifer
 
M

MCGrad2006

Guest
I think that a lot of CFers feel that way. From what I hear about my friend Kathleen, she was always there to reach out if someone needed a hand, but NEVER wanted to ask for help. I can see that in the talks I had with her. She was always asking about me, never wanting me to feel like I was burdened b/c she was so sick. She had a few close friends that she relied on throughout, but she didnt even want them to see her at her worst. She cared so much about them that she didnt want them to feel bad. I can totally understand that thought process. Sometimes I try to milk it when I am sick...esp. when Nana is around, lol...but for the most part I want to do it myself. I dont want to be a burden either. You want to be able to give your loved ones some 'time off' if you will. A part of it to is probably that you dont want to have to admit that something is wrong. Thats an issue with me. I feel like I should be able to do something and if I cant, then oh well, I wont do it.

Feel better soon! We love you! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
I think that a lot of CFers feel that way. From what I hear about my friend Kathleen, she was always there to reach out if someone needed a hand, but NEVER wanted to ask for help. I can see that in the talks I had with her. She was always asking about me, never wanting me to feel like I was burdened b/c she was so sick. She had a few close friends that she relied on throughout, but she didnt even want them to see her at her worst. She cared so much about them that she didnt want them to feel bad. I can totally understand that thought process. Sometimes I try to milk it when I am sick...esp. when Nana is around, lol...but for the most part I want to do it myself. I dont want to be a burden either. You want to be able to give your loved ones some 'time off' if you will. A part of it to is probably that you dont want to have to admit that something is wrong. Thats an issue with me. I feel like I should be able to do something and if I cant, then oh well, I wont do it.

Feel better soon! We love you! <img src="i/expressions/heart.gif" border="0">
 
M

MCGrad2006

Guest
I think that a lot of CFers feel that way. From what I hear about my friend Kathleen, she was always there to reach out if someone needed a hand, but NEVER wanted to ask for help. I can see that in the talks I had with her. She was always asking about me, never wanting me to feel like I was burdened b/c she was so sick. She had a few close friends that she relied on throughout, but she didnt even want them to see her at her worst. She cared so much about them that she didnt want them to feel bad. I can totally understand that thought process. Sometimes I try to milk it when I am sick...esp. when Nana is around, lol...but for the most part I want to do it myself. I dont want to be a burden either. You want to be able to give your loved ones some 'time off' if you will. A part of it to is probably that you dont want to have to admit that something is wrong. Thats an issue with me. I feel like I should be able to do something and if I cant, then oh well, I wont do it.

Feel better soon! We love you! <img src="i/expressions/heart.gif" border="0">
 
S

Scarlett81

New member
Jennifer I think alot of us feel the same way as you-at least sometimes.

I am a complete people pleaser too-to the point where I have really made myself a punching bag with relationships even. I hate confrontation, and I want people to like and understand me to the point where I wouldn't speak up for what I feel is right. That is changing now-for some reason, I just don't care as much, and I'm tired. I speak up alot more now. I guess when I have kids, I'm gonna be really tired and I'll care even less so that will be good! But I don't really know why I am this way-I always have been.

And yes, I hate being in a vulnerable position where I am not in control, and need help. The last resort for me will be to ask for help-esp from certain people. My mom/my family, are the last people I want to ask b/c of the fact that they often view me as a victim and a helpless child-and I want to prove to them I don't need it. On the other hand-I get really upset when my hubby's family next door (who I really consider "my" family) doesn't offer to help or visit when I'm sick. What can I say-We're all so complicated, it doesn't make sense!

If you look at the surface-yes, cf rules my life. I have 2 hour long treatments a day, I eat like a soldier-regimented, consistently healthy meals, take handfuls of vitamins a day, schedule my rest, and plan my social events around how i feel. I have to. BUT-I don't think about cf every minute. I've said it before-I dont' have a set year in my mind when i think I'll probably go. I dont' live like that. I plan on living. My life will just be more complicated than others. This is why I need breaks from this site once in a while-I don't relate to some that constantly talk about the hard facts of death-I dont' believe we should live that way.

Its all a balance. You've just come out of an extremely difficult time-its normal for you to be having all these thoughts. Just try to keep them organized in your mind-maybe through writing, art, or talking it out, so your head doesn't explode.

<img src="i/expressions/heart.gif" border="0">
 
S

Scarlett81

New member
Jennifer I think alot of us feel the same way as you-at least sometimes.

I am a complete people pleaser too-to the point where I have really made myself a punching bag with relationships even. I hate confrontation, and I want people to like and understand me to the point where I wouldn't speak up for what I feel is right. That is changing now-for some reason, I just don't care as much, and I'm tired. I speak up alot more now. I guess when I have kids, I'm gonna be really tired and I'll care even less so that will be good! But I don't really know why I am this way-I always have been.

And yes, I hate being in a vulnerable position where I am not in control, and need help. The last resort for me will be to ask for help-esp from certain people. My mom/my family, are the last people I want to ask b/c of the fact that they often view me as a victim and a helpless child-and I want to prove to them I don't need it. On the other hand-I get really upset when my hubby's family next door (who I really consider "my" family) doesn't offer to help or visit when I'm sick. What can I say-We're all so complicated, it doesn't make sense!

If you look at the surface-yes, cf rules my life. I have 2 hour long treatments a day, I eat like a soldier-regimented, consistently healthy meals, take handfuls of vitamins a day, schedule my rest, and plan my social events around how i feel. I have to. BUT-I don't think about cf every minute. I've said it before-I dont' have a set year in my mind when i think I'll probably go. I dont' live like that. I plan on living. My life will just be more complicated than others. This is why I need breaks from this site once in a while-I don't relate to some that constantly talk about the hard facts of death-I dont' believe we should live that way.

Its all a balance. You've just come out of an extremely difficult time-its normal for you to be having all these thoughts. Just try to keep them organized in your mind-maybe through writing, art, or talking it out, so your head doesn't explode.

<img src="i/expressions/heart.gif" border="0">
 
S

Scarlett81

New member
Jennifer I think alot of us feel the same way as you-at least sometimes.

I am a complete people pleaser too-to the point where I have really made myself a punching bag with relationships even. I hate confrontation, and I want people to like and understand me to the point where I wouldn't speak up for what I feel is right. That is changing now-for some reason, I just don't care as much, and I'm tired. I speak up alot more now. I guess when I have kids, I'm gonna be really tired and I'll care even less so that will be good! But I don't really know why I am this way-I always have been.

And yes, I hate being in a vulnerable position where I am not in control, and need help. The last resort for me will be to ask for help-esp from certain people. My mom/my family, are the last people I want to ask b/c of the fact that they often view me as a victim and a helpless child-and I want to prove to them I don't need it. On the other hand-I get really upset when my hubby's family next door (who I really consider "my" family) doesn't offer to help or visit when I'm sick. What can I say-We're all so complicated, it doesn't make sense!

If you look at the surface-yes, cf rules my life. I have 2 hour long treatments a day, I eat like a soldier-regimented, consistently healthy meals, take handfuls of vitamins a day, schedule my rest, and plan my social events around how i feel. I have to. BUT-I don't think about cf every minute. I've said it before-I dont' have a set year in my mind when i think I'll probably go. I dont' live like that. I plan on living. My life will just be more complicated than others. This is why I need breaks from this site once in a while-I don't relate to some that constantly talk about the hard facts of death-I dont' believe we should live that way.

Its all a balance. You've just come out of an extremely difficult time-its normal for you to be having all these thoughts. Just try to keep them organized in your mind-maybe through writing, art, or talking it out, so your head doesn't explode.

<img src="i/expressions/heart.gif" border="0">
 
S

scabaskiblio

New member
Hello, Jennifer.
I just wanted to chime in on this issue. I feel I definitely try to overcompensate for my CF. Like Lindsey, I felt that I had to prove myself capable and worthy in some way and I did this by excelling academically. It was a double-edged sword however; while I did quite well in school, I also had my entire self-esteem wrapped up in achieving academic success, so I put a lot of pressure on myself. Looking back, I see how irrelevant grades actually are. It is much more important to be passionate about something and to enjoy what you do.

As far as feeling like a burden to others, growing up I felt a lot of guilt about my CF. My parents would get so anxious and worried whenever I got sick, I always felt that it was somehow my fault that they were feeling this way. I coped with my guilt by hiding the way I felt, and by not telling them when I felt sick. This was very bad, as it taught me to start not only hiding things from them, but also denying it to myself. I ran away from CF for years before I finally was forced to start dealing with it when I got sick and developed CFRD, etc.

Even now, though, I can't really talk about my CF or how I feel to others. I keep a lot of protective barriers up, so much so that sometimes it feels like I can't ever be really honest with people even when it is not about CF. By hiding my disease, i feel like I am hiding my true self, and ultimately, I feel like I am just acting instead of really relating to others.

When I was younger I had huge abandonnment issues, too. I was always afraid that people would perceive my weaknesses and deem me unworthy of their attention and time. I coped with that in really unhealthy ways. Generally I rejected them before they had a chance to reject me. In that way I felt I was in control of the situation, but it left me without any support system, too.

I guess my advice is that you have to let yourself depend on other people, and risk the possibility of being hurt or abandonned by them. If someone really loves you, they won't think of you as a burden at all; in fact, they will be disappointed if you don't let them help you. Everyone wants to feel needed, and by asking them to help care for you, they will feel that you really need them.

I used to be a push-over, too, but as I have gotten older, I have gotten a lot more assertive and maybe even a little meaner.

Valerie
 
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