M
Mom2mouse
Guest
How about you ask that person to breathe through a straw non-stop for a day so that they can experience just a very small aspect of "a day in the life of someone with CF"?
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CF effects all aspects of your life?
- Thread starter mamerth
- Start date
Given that IGNORANCE is not knowing or not understanding, your friend is simply ingnorant of CF. You could direct them to some valid information or just smile and say "sure".
I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
Good luck,
Bill
I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
Good luck,
Bill
Given that IGNORANCE is not knowing or not understanding, your friend is simply ingnorant of CF. You could direct them to some valid information or just smile and say "sure".
I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
Good luck,
Bill
I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
Good luck,
Bill
Given that IGNORANCE is not knowing or not understanding, your friend is simply ingnorant of CF. You could direct them to some valid information or just smile and say "sure".
<br />
<br />I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
<br />
<br />Good luck,
<br />Bill
<br />
<br />I'm almost twice your age, and still pretty healthy, but CF is a constant part of my entire life. Like your friend, very few people have a clue to my situation.
<br />
<br />Good luck,
<br />Bill
I partially agree with Deb. While you might not be able to escape living with CF and all the treatments, you certainly don't need to let CF define you. Whether or not the person mentioned in the OP understands the struggles of a person with CF we can't know. What if that person has gone through a particularly tough time themselves and is able to relate? Does one need to have a particular set of problems to identify if another person is letting CF define their life?
I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
I partially agree with Deb. While you might not be able to escape living with CF and all the treatments, you certainly don't need to let CF define you. Whether or not the person mentioned in the OP understands the struggles of a person with CF we can't know. What if that person has gone through a particularly tough time themselves and is able to relate? Does one need to have a particular set of problems to identify if another person is letting CF define their life?
I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
I partially agree with Deb. While you might not be able to escape living with CF and all the treatments, you certainly don't need to let CF define you. Whether or not the person mentioned in the OP understands the struggles of a person with CF we can't know. What if that person has gone through a particularly tough time themselves and is able to relate? Does one need to have a particular set of problems to identify if another person is letting CF define their life?
<br />
<br />I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
<br />
<br />Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
<br />
<br />You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
<br />
<br />Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
<br />
<br />I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
<br />
<br />I see quite a lot of people fall into this trap and it's not just people with chronic diseases. Some people fall into a role and portray that role ad nauseum. Sometimes that role can generically be "the victim," as an acquaintance of mine often plays. I brought it to her attention and at first it was met with some fierce opposition, but I think she's starting to see the pattern and the effect it's having on her social life.
<br />
<br />Another important thing to remember is that almost everybody is up to their eyeballs in life's crap. Most people really don't want to have to deal with your crap in addition to theirs. Just because they don't complain about stuff they are going through doesn't mean it's not there. Don't assume that of your friends and acquaintances you were dealt the worst hand. Remember that this is a very subjective thing. What may seem like nothing to you might be the worst thing that person has ever been though.
<br />
<br />You should be prepared for people who see you dealing with a disease and assume you have the strength and patience of 3 people. Consequently, they will come to you and unload all their problems, which can really drag you down if you're having a hard time of things yourself.
<br />
<br />Did you agree with that last paragraph? Good, now let's reverse the roles. Are you dragging people down by (perhaps unknowingly) unloading your problems on your friends, who may or may not have significant problems of their own to deal with?
<br />
<br />I interpret the OP's story like this: The OP's friend feels that every time the OP interacts with them, there's something brought up about CF (treatments, being sick, clinic visits, etc.). Because of that, the friend thinks that the OP has allowed CF to take over and define her. I really can't imagine a scenario that would lead to that conclusion on the part of the friend, other than the one I just mentioned. Perhaps this friend is irritated because they are dealing with problems of their own and use social interactions to excape those problems. Only, in this case she's only met by hearing stuff about CF. In this case she's escaping her situation only to be handed part of OP's situation, completely screwing her attempt at escape. Maybe the friend isn't needing to escape anything, maybe they just want to have a nice time with a friend. Again, that plan is screwed when they have to hear about the struggles of CF. I obviously could be wrong, but this is the scenario that makes sense in my mind.
I think you've got a lot of interesting and thorough responses already.
I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
I think you've got a lot of interesting and thorough responses already.
I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
I think you've got a lot of interesting and thorough responses already.
<br />
<br />I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
<br />
<br />In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
<br />
<br />A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
<br />
<br />Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
<br />
<br />I may be speaking to something else or tangential, but I want to say that when a treatment decision is not yet made or new symptoms or severity are appearing or a diagnosis is in the air, a person can be overwhelmed by their thoughts about it and overwhelming to others. (I think I've been there in the past and luckily my friends must've learned to tune me out.)
<br />
<br />In those situations the person needs to make a huge effort to confine the worrying and strategizing to be not 24/7. I'm not saying it's possible to block out being SOB or in pain or exhausted. But the working it all over in your mind on a constant basis: what to do next? am I doing the right thing now? do I have a new health problem or is this a different manifestation of the old ones?---That needs to be set aside for specific chunks of time if at all possible.
<br />
<br />A close friend of mine is in therapy and being medicated for anxiety right now and the therapist has instructed her to define "worrying times" and when she starts to spin out with fears, to stop herself and "save" the worrying for that designated time, and then get busy with something else that takes up her attention.
<br />
<br />Hope this helps. Even if it's not what you/you're friend was talking about, I think it's a great strategy.
Andrea2XCFers
New member
You have gotten a lot of different responses, but I'll add mine, anyway. Of course CF will affect you emotionally and spiritually. I'm a mom of two boys (young men, now) with CF and it's taken over all of our family's lives! How can it not? Does that mean we spend all day in the dumps? NO. Does it mean we stop doing what we love? NO. Does it make everything take on a different, deeper meaning? YOU BETTER BELIEVE IT! Since September 16, 1996, I have not had one moment where I don't regard things through the CF lens. Often, groups of parents will joke about being grandparents someday, and tease my boys about 30th high school reunions. I immediately think: Will we see those things? Will my boys have families? Will they see 50, or 30, or 25? My son wants to be a cop, and I think "Can a cop have CF?" If I verbalized those thoughts everytime I have them, my friends and coworkers would disown me. Usually, my closest friends will say (after) "you know, I wondered how you took that conversation, because I thought of your boys." Your real friends will tell you when it's time to change the subject; but they'll also hold you tight during the dark and scary times, when your thoughts and fears run wild. Chin up, keep fighting, and try not to share your innermost self with people who will hurt you like that. You are not alone!