I know I saw a post about something similar not that long ago, but I couldn't find it. Although my 6 year old son has yet to be diagnosed, he's been off and on ill for the last 5 years. He's had a non-stop cough, which is really terrible in the mornings, and then slows down during the day with only a cough every 10 minutes or so. His weight hasn't changed in 2 years, his bmi is 13 or just over 13 (depending on when he's weighed), which is off the chart. He's had stomach problems and went through an upper and lower endoscopy a couple of months ago. He's now scheduled to have a bronchoscopy on Dec.1, because his pulmonologist didn't like the way his lungs looked on the x-ray. His last FEV was in the upper 60's, before the albuterol treatment, and then only went up a small amount. To get to my point, I had to bring him into work for the first time Monday. This is the first time most of my co-workers have met him. He had just been to the doctor for pink eye. Knowing what my son has been going through, I guess everyone expected to see a walking skeleton with blue skin from lack of oxygen. I received two comments about how he doesn't look too skinny. He was wearing a baggy t-shirt and baggy sweat pants! Boy if they had seen his skinny legs in shorts, or how his ribs can be very clearly seen on both his front and his back, I think their response would be different. I also received the comment that he looks so healthy for someone who's been going through all of this. He's very active and extremely social, so he talked the ears off of everyone. He was bouncing and playing and was his normal pale self, but with pink eye, and since it was in the afternoon, he was only coughing every 10 minutes or so. I can't tell if people are trying to say they don't believe me, or if they are trying to be nice by saying he doesn't look sick, or what. Either way, I feel like I'm being put on the defensive, which is stupid I guess, but I can't help feeling that way. It feels funny to talk to these people afterwards, because I keep wondering what they are thinking. Anyone else been through anything like this? How do you deal?
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"Looks healthy to me".....
- Thread starter Eden
- Start date
I know I saw a post about something similar not that long ago, but I couldn't find it. Although my 6 year old son has yet to be diagnosed, he's been off and on ill for the last 5 years. He's had a non-stop cough, which is really terrible in the mornings, and then slows down during the day with only a cough every 10 minutes or so. His weight hasn't changed in 2 years, his bmi is 13 or just over 13 (depending on when he's weighed), which is off the chart. He's had stomach problems and went through an upper and lower endoscopy a couple of months ago. He's now scheduled to have a bronchoscopy on Dec.1, because his pulmonologist didn't like the way his lungs looked on the x-ray. His last FEV was in the upper 60's, before the albuterol treatment, and then only went up a small amount. To get to my point, I had to bring him into work for the first time Monday. This is the first time most of my co-workers have met him. He had just been to the doctor for pink eye. Knowing what my son has been going through, I guess everyone expected to see a walking skeleton with blue skin from lack of oxygen. I received two comments about how he doesn't look too skinny. He was wearing a baggy t-shirt and baggy sweat pants! Boy if they had seen his skinny legs in shorts, or how his ribs can be very clearly seen on both his front and his back, I think their response would be different. I also received the comment that he looks so healthy for someone who's been going through all of this. He's very active and extremely social, so he talked the ears off of everyone. He was bouncing and playing and was his normal pale self, but with pink eye, and since it was in the afternoon, he was only coughing every 10 minutes or so. I can't tell if people are trying to say they don't believe me, or if they are trying to be nice by saying he doesn't look sick, or what. Either way, I feel like I'm being put on the defensive, which is stupid I guess, but I can't help feeling that way. It feels funny to talk to these people afterwards, because I keep wondering what they are thinking. Anyone else been through anything like this? How do you deal?
I know I saw a post about something similar not that long ago, but I couldn't find it. Although my 6 year old son has yet to be diagnosed, he's been off and on ill for the last 5 years. He's had a non-stop cough, which is really terrible in the mornings, and then slows down during the day with only a cough every 10 minutes or so. His weight hasn't changed in 2 years, his bmi is 13 or just over 13 (depending on when he's weighed), which is off the chart. He's had stomach problems and went through an upper and lower endoscopy a couple of months ago. He's now scheduled to have a bronchoscopy on Dec.1, because his pulmonologist didn't like the way his lungs looked on the x-ray. His last FEV was in the upper 60's, before the albuterol treatment, and then only went up a small amount. To get to my point, I had to bring him into work for the first time Monday. This is the first time most of my co-workers have met him. He had just been to the doctor for pink eye. Knowing what my son has been going through, I guess everyone expected to see a walking skeleton with blue skin from lack of oxygen. I received two comments about how he doesn't look too skinny. He was wearing a baggy t-shirt and baggy sweat pants! Boy if they had seen his skinny legs in shorts, or how his ribs can be very clearly seen on both his front and his back, I think their response would be different. I also received the comment that he looks so healthy for someone who's been going through all of this. He's very active and extremely social, so he talked the ears off of everyone. He was bouncing and playing and was his normal pale self, but with pink eye, and since it was in the afternoon, he was only coughing every 10 minutes or so. I can't tell if people are trying to say they don't believe me, or if they are trying to be nice by saying he doesn't look sick, or what. Either way, I feel like I'm being put on the defensive, which is stupid I guess, but I can't help feeling that way. It feels funny to talk to these people afterwards, because I keep wondering what they are thinking. Anyone else been through anything like this? How do you deal?
Sometimes people are trying to be helpful and reassuring. But other times, I do hear more of an accusatory "he doesn't LOOK sick"
I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
Sometimes people are trying to be helpful and reassuring. But other times, I do hear more of an accusatory "he doesn't LOOK sick"
I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
Sometimes people are trying to be helpful and reassuring. But other times, I do hear more of an accusatory "he doesn't LOOK sick"
<br />
<br />I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
<br />
<br />I try to give people the benefit of the doubt and just say something to the effect of "thank you a lot of hard work goes into keeping him healthy"
M
Mommafirst
Guest
Oh gosh, this one bugs the heck out of me. When we were agonizing over the decision to have a feeding tube placed for my daughter, I was sooooooo upset by well meaning friends and family who thought it was their business to tell me that she didn't look malnourished to them, she looked perfectly normal. I got in the habit of getting snippy and asking when they got their medical degree with a specialty in CF. It is such a curse and a blessing at the same time that CF patients can look so normal and healthy and yet be struggling to no end. I read a lot of the CF blogs and MANY of even the sickest CF patients can look "just fine".
Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
M
Mommafirst
Guest
Oh gosh, this one bugs the heck out of me. When we were agonizing over the decision to have a feeding tube placed for my daughter, I was sooooooo upset by well meaning friends and family who thought it was their business to tell me that she didn't look malnourished to them, she looked perfectly normal. I got in the habit of getting snippy and asking when they got their medical degree with a specialty in CF. It is such a curse and a blessing at the same time that CF patients can look so normal and healthy and yet be struggling to no end. I read a lot of the CF blogs and MANY of even the sickest CF patients can look "just fine".
Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
M
Mommafirst
Guest
Oh gosh, this one bugs the heck out of me. When we were agonizing over the decision to have a feeding tube placed for my daughter, I was sooooooo upset by well meaning friends and family who thought it was their business to tell me that she didn't look malnourished to them, she looked perfectly normal. I got in the habit of getting snippy and asking when they got their medical degree with a specialty in CF. It is such a curse and a blessing at the same time that CF patients can look so normal and healthy and yet be struggling to no end. I read a lot of the CF blogs and MANY of even the sickest CF patients can look "just fine".
<br />
<br />Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
<br />
<br />Sorry you have to deal with this, I'm sure your co-workers are not accusing you of anything and that it is meant to make you feel better, they just don't realize that it actually makes you feel worse.
I'm struggling with this personally right now. My parents have started doing fundraisers to help with the costs of a lung transplant and I hate asking people for money in the first place but this time its worse because I feel like I don't look what you would expect someone needing a transplant to look like. I'm not on oxygen except at night, I can still get around without trouble with the exception of walking longs distances or stairs. I'm afraid I'm gonna show up to one of these events and people are gonna question us or how sick I am. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I'm struggling with this personally right now. My parents have started doing fundraisers to help with the costs of a lung transplant and I hate asking people for money in the first place but this time its worse because I feel like I don't look what you would expect someone needing a transplant to look like. I'm not on oxygen except at night, I can still get around without trouble with the exception of walking longs distances or stairs. I'm afraid I'm gonna show up to one of these events and people are gonna question us or how sick I am. <img src="i/expressions/face-icon-small-sad.gif" border="0">
I'm struggling with this personally right now. My parents have started doing fundraisers to help with the costs of a lung transplant and I hate asking people for money in the first place but this time its worse because I feel like I don't look what you would expect someone needing a transplant to look like. I'm not on oxygen except at night, I can still get around without trouble with the exception of walking longs distances or stairs. I'm afraid I'm gonna show up to one of these events and people are gonna question us or how sick I am. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Thank you everyone for responding.
mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
Thank you everyone for responding.
mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
Thank you everyone for responding.
<br />mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
<br />mag6125, I'm so sorry you're in that situation, that's way worse that what I'm going through. I imagine when people say something to you, it really stings. I guess it's just really hard for people to understand unless they are going through it.
"Looks healthy to me".....Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odd
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
mag6125... that's got to be REALLY hard.
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
mag6125... that's got to be REALLY hard.
"Looks healthy to me".....Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odd
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
mag6125... that's got to be REALLY hard.
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
mag6125... that's got to be REALLY hard.
"Looks healthy to me".....Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odd
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
<br />
<br />I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
<br />
<br />Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />mag6125... that's got to be REALLY hard.
Ughhh I hate this one, too. No matter how well-meaning people are, it's hard. It can feel like our child's struggles are being minimized, or like we are exaggerating, or like they flat-out don't believe us. Of course, odds are none of that is true in many cases, but that is how it *feels* ...and unfortunately, sometimes that IS how people feel, since they don't have a good understanding of CF (and aren't open to learning.)
<br />
<br />I went through some of that before Emily got her tube, too, and it drove me NUTS. 'She looks SO much better, how much has she grown?' OK, if you are going to ask me how much she's grown, would you like me to lie? Because when I'd tell the truth, they'd insist to my- her mother's!!! face, that NO, she'd definitely gotten taller and looked so much better than the last time they'd seen (grilled) me. I started getting the insane urge to tell them 'yes, she's gained 10lbs and grown 5" and is doing fantastic... we are embarking on needless surgery ama. Thanks for asking.'
<br />
<br />Anyway, it's hard. People love us and want the best; other times it people who are nosy and too interested in our business... in any case, this is a really common issue. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />mag6125... that's got to be REALLY hard.