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When family doesn't "Get it"
- Thread starter CFkitty
- Start date
Lance2020x
New member
When family doesn't
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
Lance2020x
New member
When family doesn't
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
Lance2020x
New member
When family doesn't
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
<br />
<br />Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
<br />I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
<br />
<br />I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
<br />
<br />Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
I am only 24 so I don't have a whole lot of wisdom to offer... but I used to think the EXACT thing about my oldest brother (who doesn't have CF). He never showed any sort of interest or concern what so ever.
<br />
<br />Eventually we were talking one day and (after living with CF for 21 years) he said "I really respect what you and James (my middle brother with CF) have gone through."
<br />I was shocked. I was honest with him and told him what I'd thought, and he abologize and said it wasn't the case, he just couldn't imagine what it was like so didn't really know WHAT to say or how to handle it.
<br />
<br />I know growing up healthy in a family with terminal illness(es) is very difficult and does a lot to the healthy members.
<br />
<br />Have you told them that you feel like you are getting the cold shoulder? That you really do want to be there and it's NOT just an excuse?
When family doesn't
CFKitty, I completely understand. My family either avoids me or acts awkward around me. I don't talk about emotions or feeling in relationship to the illness-- except to my mom and my husband and it make them a bit uncomfortable, too.
<br />
<br />Hugs to you!!
CFKitty, I completely understand. My family either avoids me or acts awkward around me. I don't talk about emotions or feeling in relationship to the illness-- except to my mom and my husband and it make them a bit uncomfortable, too.
<br />
<br />Hugs to you!!
G
gunelle
Guest
When family doesn't
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
G
gunelle
Guest
When family doesn't
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
G
gunelle
Guest
When family doesn't
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
<br />
<br />I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
<br />I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
As recently diagnosed I too experience people that "don't get it". My family is still coming to terms with it, I think. E.g. my parents invited me for a last minute trip abroad for only two days, leaving saturday morning and returning sunday afternoon, which I had to decline because it would be too stressfull for me and I couldn't get my rest as I need, and packing all my medication and things. I don't blame them for treating me normal by all means, but it's like they still don't fully comprehend that I am "different" now. Also about opening windows without asking me or not thinking about if there is smoke where we are going, things that I have to take into account now, but which is not part of their daily routine. Also we live in different countries, so they are not part of my daily life/rutine.
<br />
<br />I live with my boyfriend and sometimes it seems that he "doesn't get it" either. He is very supportive, but it's like he doesn't grasp the reality completely, e.g. he dosn't think that I am going to get worse, and I tell him that this illness is progressive. "But you are much better now, than when you were diagnosed, yes but I am better because of medicine, but I am not going to get cured".
<br />I understand him, because if it was him that was ill, I would be very sad, in a way I prefer it to be me rather than him that's ill. I feel more in control of it.
mamaScarlett
Active member
Very sorry that pwcf have to deal with this from family. I haven't experienced it from my family-bc they saw me dx at a young age and know the reality of cf in our family. I have dealt with this a bit from my husbands family though.
Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
Now they have a new respect for it.
Once people see you at your worst they can often appreciate your situation better.
We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.
Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
Now they have a new respect for it.
Once people see you at your worst they can often appreciate your situation better.
We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.
mamaScarlett
Active member
Very sorry that pwcf have to deal with this from family. I haven't experienced it from my family-bc they saw me dx at a young age and know the reality of cf in our family. I have dealt with this a bit from my husbands family though.
Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
Now they have a new respect for it.
Once people see you at your worst they can often appreciate your situation better.
We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.
Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
Now they have a new respect for it.
Once people see you at your worst they can often appreciate your situation better.
We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.
mamaScarlett
Active member
Very sorry that pwcf have to deal with this from family. I haven't experienced it from my family-bc they saw me dx at a young age and know the reality of cf in our family. I have dealt with this a bit from my husbands family though.
<br />Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
<br />There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
<br />A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
<br />Now they have a new respect for it.
<br />Once people see you at your worst they can often appreciate your situation better.
<br />We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
<br />They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.
<br />Since I came into that family later in life and cf was basically unknown to them, they had to be educated on the seriousness of it.
<br />There are still challenges from time to time, esp when my husband and I just can't make it to certain family events bc I either am sick, or I'm worried I'll get sick.
<br />A few years ago I got seriously sick one summer and that changed how they saw me. They finally saw how serious cf is, and how fragile it can be.
<br />Now they have a new respect for it.
<br />Once people see you at your worst they can often appreciate your situation better.
<br />We've had (rare) but a couple brushes with people (friends) that just didn't get it and expected WAY to much of us. My husband has had to say "Why don't you google Cf...or go to cff.org and see just what our family is dealing with here, then maybe you'll leave us alone."
<br />They have to come to terms and have some respect for you. And YOU also have to come to terms. If you know in your heart that stepping back from situations is what you have to do sometimes to protect yourself, then you know what the right thing to do is. You don't second guess yourself. Your loved ones will eventually come around.