Have you ever been frustrated about this?

D

dillman

New member
Lately I've felt like it's been harder to explain to some of our friends what it's like to have a person in the family with CF and why things are just different. Our son has always been very healthy and up until last year really never had to do much for his CF. I think everyone always felt like yes, he had CF but he was fine. The past year or so his CF has demanded much more out of him and our family. It's ok and we're all willing to do whatever it takes but I feel like some of our friends just don't understand and expect things to be like they used to be. We've always been a very involved family...we were in everything. Our son played in a lot of sports and my husband was always a coach. I always helped out and volunteered for whatever they needed me for. Although I realize it is hard for our friends to completely understand I just get tired of having to explain 'why we can't' all the time. I feel like I sound like a sympathy case if I try to explain too much. I usually tell them that we just need more time to commit to his treatments and that comes first. The majority of them say they understand, but you can tell they really don't and how could they really? I know they mean well but it can get exhausting explaining all the time.

I just wondered if any of you have ever felt frustrated for a similar reason. It's something I've really had a hard time with this past year or so and would appreciate any advice. Thanks!
 
D

dillman

New member
Lately I've felt like it's been harder to explain to some of our friends what it's like to have a person in the family with CF and why things are just different. Our son has always been very healthy and up until last year really never had to do much for his CF. I think everyone always felt like yes, he had CF but he was fine. The past year or so his CF has demanded much more out of him and our family. It's ok and we're all willing to do whatever it takes but I feel like some of our friends just don't understand and expect things to be like they used to be. We've always been a very involved family...we were in everything. Our son played in a lot of sports and my husband was always a coach. I always helped out and volunteered for whatever they needed me for. Although I realize it is hard for our friends to completely understand I just get tired of having to explain 'why we can't' all the time. I feel like I sound like a sympathy case if I try to explain too much. I usually tell them that we just need more time to commit to his treatments and that comes first. The majority of them say they understand, but you can tell they really don't and how could they really? I know they mean well but it can get exhausting explaining all the time.

I just wondered if any of you have ever felt frustrated for a similar reason. It's something I've really had a hard time with this past year or so and would appreciate any advice. Thanks!
 
D

dillman

New member
Lately I've felt like it's been harder to explain to some of our friends what it's like to have a person in the family with CF and why things are just different. Our son has always been very healthy and up until last year really never had to do much for his CF. I think everyone always felt like yes, he had CF but he was fine. The past year or so his CF has demanded much more out of him and our family. It's ok and we're all willing to do whatever it takes but I feel like some of our friends just don't understand and expect things to be like they used to be. We've always been a very involved family...we were in everything. Our son played in a lot of sports and my husband was always a coach. I always helped out and volunteered for whatever they needed me for. Although I realize it is hard for our friends to completely understand I just get tired of having to explain 'why we can't' all the time. I feel like I sound like a sympathy case if I try to explain too much. I usually tell them that we just need more time to commit to his treatments and that comes first. The majority of them say they understand, but you can tell they really don't and how could they really? I know they mean well but it can get exhausting explaining all the time.

I just wondered if any of you have ever felt frustrated for a similar reason. It's something I've really had a hard time with this past year or so and would appreciate any advice. Thanks!
 
D

dillman

New member
Lately I've felt like it's been harder to explain to some of our friends what it's like to have a person in the family with CF and why things are just different. Our son has always been very healthy and up until last year really never had to do much for his CF. I think everyone always felt like yes, he had CF but he was fine. The past year or so his CF has demanded much more out of him and our family. It's ok and we're all willing to do whatever it takes but I feel like some of our friends just don't understand and expect things to be like they used to be. We've always been a very involved family...we were in everything. Our son played in a lot of sports and my husband was always a coach. I always helped out and volunteered for whatever they needed me for. Although I realize it is hard for our friends to completely understand I just get tired of having to explain 'why we can't' all the time. I feel like I sound like a sympathy case if I try to explain too much. I usually tell them that we just need more time to commit to his treatments and that comes first. The majority of them say they understand, but you can tell they really don't and how could they really? I know they mean well but it can get exhausting explaining all the time.

I just wondered if any of you have ever felt frustrated for a similar reason. It's something I've really had a hard time with this past year or so and would appreciate any advice. Thanks!
 
D

dillman

New member
Lately I've felt like it's been harder to explain to some of our friends what it's like to have a person in the family with CF and why things are just different. Our son has always been very healthy and up until last year really never had to do much for his CF. I think everyone always felt like yes, he had CF but he was fine. The past year or so his CF has demanded much more out of him and our family. It's ok and we're all willing to do whatever it takes but I feel like some of our friends just don't understand and expect things to be like they used to be. We've always been a very involved family...we were in everything. Our son played in a lot of sports and my husband was always a coach. I always helped out and volunteered for whatever they needed me for. Although I realize it is hard for our friends to completely understand I just get tired of having to explain 'why we can't' all the time. I feel like I sound like a sympathy case if I try to explain too much. I usually tell them that we just need more time to commit to his treatments and that comes first. The majority of them say they understand, but you can tell they really don't and how could they really? I know they mean well but it can get exhausting explaining all the time.
<br />
<br />I just wondered if any of you have ever felt frustrated for a similar reason. It's something I've really had a hard time with this past year or so and would appreciate any advice. Thanks!
<br />
 
M

Mommafirst

Guest
I have this trouble, though more with family than friends. Right now we have family out of town that is getting upset that we haven't visited in quite some time -- and I do understand that, but in the fall we were in the hospital or on IVs for the month of November, ending when we were discharged from my dd getting her feeding tube. Now I don't want to travel with her feeding accessories in addition to her vest, and nebs etc. I'm just too overwhelmed.

Sorry, I didn't mean to make this about us. But YES I think its very difficult for those that don't live with CF to understand all we do to keep them healthy. I don't think its purposeful, but I think its a bit of a disconnect to look at our healthy looking kids and realize how much they deal with.
 
M

Mommafirst

Guest
I have this trouble, though more with family than friends. Right now we have family out of town that is getting upset that we haven't visited in quite some time -- and I do understand that, but in the fall we were in the hospital or on IVs for the month of November, ending when we were discharged from my dd getting her feeding tube. Now I don't want to travel with her feeding accessories in addition to her vest, and nebs etc. I'm just too overwhelmed.

Sorry, I didn't mean to make this about us. But YES I think its very difficult for those that don't live with CF to understand all we do to keep them healthy. I don't think its purposeful, but I think its a bit of a disconnect to look at our healthy looking kids and realize how much they deal with.
 
M

Mommafirst

Guest
I have this trouble, though more with family than friends. Right now we have family out of town that is getting upset that we haven't visited in quite some time -- and I do understand that, but in the fall we were in the hospital or on IVs for the month of November, ending when we were discharged from my dd getting her feeding tube. Now I don't want to travel with her feeding accessories in addition to her vest, and nebs etc. I'm just too overwhelmed.

Sorry, I didn't mean to make this about us. But YES I think its very difficult for those that don't live with CF to understand all we do to keep them healthy. I don't think its purposeful, but I think its a bit of a disconnect to look at our healthy looking kids and realize how much they deal with.
 
M

Mommafirst

Guest
I have this trouble, though more with family than friends. Right now we have family out of town that is getting upset that we haven't visited in quite some time -- and I do understand that, but in the fall we were in the hospital or on IVs for the month of November, ending when we were discharged from my dd getting her feeding tube. Now I don't want to travel with her feeding accessories in addition to her vest, and nebs etc. I'm just too overwhelmed.

Sorry, I didn't mean to make this about us. But YES I think its very difficult for those that don't live with CF to understand all we do to keep them healthy. I don't think its purposeful, but I think its a bit of a disconnect to look at our healthy looking kids and realize how much they deal with.
 
M

Mommafirst

Guest
I have this trouble, though more with family than friends. Right now we have family out of town that is getting upset that we haven't visited in quite some time -- and I do understand that, but in the fall we were in the hospital or on IVs for the month of November, ending when we were discharged from my dd getting her feeding tube. Now I don't want to travel with her feeding accessories in addition to her vest, and nebs etc. I'm just too overwhelmed.
<br />
<br />Sorry, I didn't mean to make this about us. But YES I think its very difficult for those that don't live with CF to understand all we do to keep them healthy. I don't think its purposeful, but I think its a bit of a disconnect to look at our healthy looking kids and realize how much they deal with.
 
S

Sheridan

New member
My friends and workmates are really great about understanding things and accepting that sometimes we just cannot do things. We, like Mommafirst, have some difficulty with family particularly DH side.
 
S

Sheridan

New member
My friends and workmates are really great about understanding things and accepting that sometimes we just cannot do things. We, like Mommafirst, have some difficulty with family particularly DH side.
 
S

Sheridan

New member
My friends and workmates are really great about understanding things and accepting that sometimes we just cannot do things. We, like Mommafirst, have some difficulty with family particularly DH side.
 
S

Sheridan

New member
My friends and workmates are really great about understanding things and accepting that sometimes we just cannot do things. We, like Mommafirst, have some difficulty with family particularly DH side.
 
S

Sheridan

New member
My friends and workmates are really great about understanding things and accepting that sometimes we just cannot do things. We, like Mommafirst, have some difficulty with family particularly DH side.
 
D

dillman

New member
Sheridan and Mommafirst- Thanks for your comments. I appreciate it! It's just nice to know that we're not alone with this issue. Like I say, our friends do try but at times I think it's hard for them to truly understand.

I hope the understanding comes from both your families soon.

Take care!
 
D

dillman

New member
Sheridan and Mommafirst- Thanks for your comments. I appreciate it! It's just nice to know that we're not alone with this issue. Like I say, our friends do try but at times I think it's hard for them to truly understand.

I hope the understanding comes from both your families soon.

Take care!
 
D

dillman

New member
Sheridan and Mommafirst- Thanks for your comments. I appreciate it! It's just nice to know that we're not alone with this issue. Like I say, our friends do try but at times I think it's hard for them to truly understand.

I hope the understanding comes from both your families soon.

Take care!
 
D

dillman

New member
Sheridan and Mommafirst- Thanks for your comments. I appreciate it! It's just nice to know that we're not alone with this issue. Like I say, our friends do try but at times I think it's hard for them to truly understand.

I hope the understanding comes from both your families soon.

Take care!
 
D

dillman

New member
Sheridan and Mommafirst- Thanks for your comments. I appreciate it! It's just nice to know that we're not alone with this issue. Like I say, our friends do try but at times I think it's hard for them to truly understand.
<br />
<br />I hope the understanding comes from both your families soon.
<br />
<br />Take care!
<br />
<br />
 
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