Transplantmommy
New member
I'm very open about my CF and always have been. The only time I have not been open about it is during a job interview. <img src="i/expressions/face-icon-small-smile.gif" border="0">
How open are you about CF?
- Thread starter b12bc
- Start date
Honestly, I would go as far as to say: "CF = AIDS", limited to the extent of the social stigma.
I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
Maybe some day I'll think differently, but I'm too old and very old-school.
I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
Maybe some day I'll think differently, but I'm too old and very old-school.
Honestly, I would go as far as to say: "CF = AIDS", limited to the extent of the social stigma.
I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
Maybe some day I'll think differently, but I'm too old and very old-school.
I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
Maybe some day I'll think differently, but I'm too old and very old-school.
Honestly, I would go as far as to say: "CF = AIDS", limited to the extent of the social stigma.
<br />
<br />I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
<br />
<br />Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
<br />
<br />Maybe some day I'll think differently, but I'm too old and very old-school.
<br />
<br />I HATED that my mother would tell everyone; as a child I was never treated "normal". I was never allowed to participate in any activity due to ignorance and fear.
<br />
<br />Yes, I am "in the closet" about my CF. And now having CFrD, I just lie and say Type 1. It's really a shame. But I am not ashamed. I'm just completely exhausted by stupid people, and I don't have enough time left to be giving it away to total strangers trying to educate them to not be so damn narrow and utterly stupid. This is bigger than CF. It's about treating ALL PEOPLE with dignity and respect, regardless of what they look, or sound [cough] like.
<br />
<br />Maybe some day I'll think differently, but I'm too old and very old-school.
E
entropy
Guest
@vbs420
I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
@ the topic starter
I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
MUST.
SEEM.
ADEQUATE.
TO.
ALL.
OTHERS.
SHOW.
NO.
WEAKNESS.
I.
AM.
TERMINATOR.
I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
@ the topic starter
I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
MUST.
SEEM.
ADEQUATE.
TO.
ALL.
OTHERS.
SHOW.
NO.
WEAKNESS.
I.
AM.
TERMINATOR.
E
entropy
Guest
@vbs420
I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
@ the topic starter
I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
MUST.
SEEM.
ADEQUATE.
TO.
ALL.
OTHERS.
SHOW.
NO.
WEAKNESS.
I.
AM.
TERMINATOR.
I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
@ the topic starter
I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
MUST.
SEEM.
ADEQUATE.
TO.
ALL.
OTHERS.
SHOW.
NO.
WEAKNESS.
I.
AM.
TERMINATOR.
E
entropy
Guest
@vbs420
<br />
<br />I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
<br />
<br />@ the topic starter
<br />
<br />I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
<br />
<br />MUST.
<br />SEEM.
<br />ADEQUATE.
<br />TO.
<br />ALL.
<br />OTHERS.
<br />
<br />SHOW.
<br />NO.
<br />WEAKNESS.
<br />
<br />I.
<br />AM.
<br />TERMINATOR.
<br />
<br />I had the same kind of mother. Thankfully she let me play sports, like football, and I was able to stay extremely healthy as a (young) youngster. I had to deal with not being allowed to visit friends and such because of my mother's fear. Yeah, fear that a bit of second hand smoke would do me in. In my teen years I smoked weed every day for years. I remember telling my mom "Mom, my lungs are tough, you need not worry so much." My lungs were tough for a while, but now they're just getting by. Should have listened to good ol' ma
<br />
<br />@ the topic starter
<br />
<br />I've always been "in the closet" as well about CF to all but my closest friends. I would always hide my vest when acquaintences would come over. Made sure my enzymes were hidden in a drawer, threw a cover over the nebulizer. A desperate attempt to seek approval of others. A product of our societies backwards ethical values.
<br />
<br />MUST.
<br />SEEM.
<br />ADEQUATE.
<br />TO.
<br />ALL.
<br />OTHERS.
<br />
<br />SHOW.
<br />NO.
<br />WEAKNESS.
<br />
<br />I.
<br />AM.
<br />TERMINATOR.
Thanks for all of the responses. You all shared very valid points that I'll have to think about. vbs420 summed it up well - I simply don't have the time or energy to deal with any more ignorance than I already do. Rather than be frustrated constantly by prejudice against "the diseased" or answer the same questions again and again, I continue my social life as any "normal" person would. I don't see myself as abnormal, so why should anybody else?
Thanks for all of the responses. You all shared very valid points that I'll have to think about. vbs420 summed it up well - I simply don't have the time or energy to deal with any more ignorance than I already do. Rather than be frustrated constantly by prejudice against "the diseased" or answer the same questions again and again, I continue my social life as any "normal" person would. I don't see myself as abnormal, so why should anybody else?
Thanks for all of the responses. You all shared very valid points that I'll have to think about. vbs420 summed it up well - I simply don't have the time or energy to deal with any more ignorance than I already do. Rather than be frustrated constantly by prejudice against "the diseased" or answer the same questions again and again, I continue my social life as any "normal" person would. I don't see myself as abnormal, so why should anybody else?
colinmaydahl
New member
I live my life as a "normal" adult, and I don't have to lie to anybody about who I am. I don't carry the guilt of denying who I am. CF is only a part of who I am as a person. It has never kept me from doing anything I wanted to do, I always found a way to do it. It looks like some of You are ashamed of having CF, and that breaks my heart. You should have more faith in the people around You, I'm sure they still want to be Your friend, and accept You for everything You are.
Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
Colin
Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
Colin
colinmaydahl
New member
I live my life as a "normal" adult, and I don't have to lie to anybody about who I am. I don't carry the guilt of denying who I am. CF is only a part of who I am as a person. It has never kept me from doing anything I wanted to do, I always found a way to do it. It looks like some of You are ashamed of having CF, and that breaks my heart. You should have more faith in the people around You, I'm sure they still want to be Your friend, and accept You for everything You are.
Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
Colin
Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
Colin
colinmaydahl
New member
I live my life as a "normal" adult, and I don't have to lie to anybody about who I am. I don't carry the guilt of denying who I am. CF is only a part of who I am as a person. It has never kept me from doing anything I wanted to do, I always found a way to do it. It looks like some of You are ashamed of having CF, and that breaks my heart. You should have more faith in the people around You, I'm sure they still want to be Your friend, and accept You for everything You are.
<br />
<br />Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
<br />
<br />"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
<br />Colin
<br />
<br />Stranges can be a drag when it comes to "well You don't look sick" comments. They suck, but if You the only CFer they meet, they never learn who You are or what You can or can not do. If I'm feeling healthy I don't bring it up if I meet somebody new, I let who I am speek for itself. If I'm getting sick and they see I'm not feeling well and ask I give them the CF 101 talk, answer questions, and MOVE ON. I have CF related tattoos and tell anybody that asks about them.
<br />
<br />"One of the most effective ways to overcome anxiety is to try to shift the focus of attention away from self and toward others. When we succeed in this, we find that the scale of our own problems diminishes. This is not to say we should ignore our own needs altogether, but rather that we should try to remember others' needs alongside our own, no matter how pressing ours may be."-Dalai Lama
<br />Colin
I understand your point Colin, and I respect and admire your openness about it. I really don't consider being private as lying or denying who I am (I'm not sure if that part was directed at me or not), and if somebody outright asks what is wrong, I do answer honestly. I just don't tend to have the energy or motivation to say any more than I have to. And I'll say again that my close friends DO know - between having to check my glucose 10 times a day and doing treatments and taking pills every time I eat, it would be impossible to hide. My friends would be my friends if I had 5 arms and a tail. They aren't the people that bother me. Even the kind, well-intentioned, curious ones don't bother me. I guess I have just had too many run-ins with people who treat me like dirt or like I'm an invalid because I ended up with some shitty genes and cough a lot. If I CAN avoid that, why wouldn't I?
I understand your point Colin, and I respect and admire your openness about it. I really don't consider being private as lying or denying who I am (I'm not sure if that part was directed at me or not), and if somebody outright asks what is wrong, I do answer honestly. I just don't tend to have the energy or motivation to say any more than I have to. And I'll say again that my close friends DO know - between having to check my glucose 10 times a day and doing treatments and taking pills every time I eat, it would be impossible to hide. My friends would be my friends if I had 5 arms and a tail. They aren't the people that bother me. Even the kind, well-intentioned, curious ones don't bother me. I guess I have just had too many run-ins with people who treat me like dirt or like I'm an invalid because I ended up with some shitty genes and cough a lot. If I CAN avoid that, why wouldn't I?
I understand your point Colin, and I respect and admire your openness about it. I really don't consider being private as lying or denying who I am (I'm not sure if that part was directed at me or not), and if somebody outright asks what is wrong, I do answer honestly. I just don't tend to have the energy or motivation to say any more than I have to. And I'll say again that my close friends DO know - between having to check my glucose 10 times a day and doing treatments and taking pills every time I eat, it would be impossible to hide. My friends would be my friends if I had 5 arms and a tail. They aren't the people that bother me. Even the kind, well-intentioned, curious ones don't bother me. I guess I have just had too many run-ins with people who treat me like dirt or like I'm an invalid because I ended up with some shitty genes and cough a lot. If I CAN avoid that, why wouldn't I?
I understand your point Colin, and I respect and admire your openness about it. I really don't consider being private as lying or denying who I am (I'm not sure if that part was directed at me or not), and if somebody outright asks what is wrong, I do answer honestly. I just don't tend to have the energy or motivation to say any more than I have to. And I'll say again that my close friends DO know - between having to check my glucose 10 times a day and doing treatments and taking pills every time I eat, it would be impossible to hide. My friends would be my friends if I had 5 arms and a tail. They aren't the people that bother me. Even the kind, well-intentioned, curious ones don't bother me. I guess I have just had too many run-ins with people who treat me like dirt or like I'm an invalid because I ended up with some shitty genes and cough a lot. If I CAN avoid that, why wouldn't I?