With an eating disorder.

SIcklyhatED · Feb 5, 2011

Hello, the name's Sara and I'm brand-spanking new here (though I've been creeping for awhile).
Me in a nutshell: 17 (18 in 2 months), 5'1, Sr in highschool, diagnosed with CF at birth along with many of you, reside in sunny Arizona, half Ecuadorian with a lovely, huge Latin family, aspiring chef and medical mishap. I'm FREAKISHLY healthy, seriously. Doctors even question if I was given a correct diagnosis sometimes, but alas I'm stuck with these mutated genes.

I've scoured these forums for any posts of any mention of anyone who has actually HAD an ED along with CF. I'm beginning to think I am the only inhabitant of this group. So, I'm reaching out.

More or less: severe depression in elementary school (yes, little ones can get it to) with self-injury tendancies at at that tender age which sparked a full blown eating disorder in 7th grade. Through 8th/early freshman year it was bad. My lowest was 81 lbs, deliberatly, and would've gladly continued had my nosy doctor not tipped my mother off.
So.
Freshman through Sophomore year was a living hell. The tricky thing with eating disorders is that once caught, you switch tactics. I chose self-injury. The ED was put on the back burner for a few years.

I switched Highschools, improved dramatically, then this summer I've begun to retreat back into eating disordered behavior with my highest around 123, currently 115.
I've never, ever, never, ever ever had weight issues as far as I've known. I was pretty normal. my parents and doctors told me "eat whatever you want" which put a few pounds on me and my eyes were opened. funny that the very people who swore to not treat me as a textbook CF patient were doing just that...

Sorry for the rant and massive info overload.
I've:
1. never met another CF patient
2. have had very limited exposure and conversation with ED patients in real life.
so naturally I'm needing some connection here.

please tell me there's another CF patient out there, here, who has dealt with this: having an eating disorder. not just "people say i have one." "Everyone asks if I'm anorexic." No, actually living in that underworld, and dealing with the fact that you are a normal teenager who just so happens to have a disease, while wanting to loose a few pounds, but not being able to. i remember when my mother would cheerlead if I gained 2 pounds and freak if i lost 1....

it's just extremely dificult to balance these 2 things together. one one hand my doctor and parents want me to maintain a weight, and on the other I know for a FACT that I'm at an unhealthy body composition (notice I dont say weight) and need to loose. ranting..... of all the side affects to have, I dont get the one I want.

anyways, please respond, post, whatever, and quell my fear of being a freakishly alone person once more for a disease that no one else seems to have. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks,
-S

SIcklyhatED · Feb 5, 2011

Hello, the name's Sara and I'm brand-spanking new here (though I've been creeping for awhile).
Me in a nutshell: 17 (18 in 2 months), 5'1, Sr in highschool, diagnosed with CF at birth along with many of you, reside in sunny Arizona, half Ecuadorian with a lovely, huge Latin family, aspiring chef and medical mishap. I'm FREAKISHLY healthy, seriously. Doctors even question if I was given a correct diagnosis sometimes, but alas I'm stuck with these mutated genes.

I've scoured these forums for any posts of any mention of anyone who has actually HAD an ED along with CF. I'm beginning to think I am the only inhabitant of this group. So, I'm reaching out.

More or less: severe depression in elementary school (yes, little ones can get it to) with self-injury tendancies at at that tender age which sparked a full blown eating disorder in 7th grade. Through 8th/early freshman year it was bad. My lowest was 81 lbs, deliberatly, and would've gladly continued had my nosy doctor not tipped my mother off.
So.
Freshman through Sophomore year was a living hell. The tricky thing with eating disorders is that once caught, you switch tactics. I chose self-injury. The ED was put on the back burner for a few years.

I switched Highschools, improved dramatically, then this summer I've begun to retreat back into eating disordered behavior with my highest around 123, currently 115.
I've never, ever, never, ever ever had weight issues as far as I've known. I was pretty normal. my parents and doctors told me "eat whatever you want" which put a few pounds on me and my eyes were opened. funny that the very people who swore to not treat me as a textbook CF patient were doing just that...

Sorry for the rant and massive info overload.
I've:
1. never met another CF patient
2. have had very limited exposure and conversation with ED patients in real life.
so naturally I'm needing some connection here.

please tell me there's another CF patient out there, here, who has dealt with this: having an eating disorder. not just "people say i have one." "Everyone asks if I'm anorexic." No, actually living in that underworld, and dealing with the fact that you are a normal teenager who just so happens to have a disease, while wanting to loose a few pounds, but not being able to. i remember when my mother would cheerlead if I gained 2 pounds and freak if i lost 1....

it's just extremely dificult to balance these 2 things together. one one hand my doctor and parents want me to maintain a weight, and on the other I know for a FACT that I'm at an unhealthy body composition (notice I dont say weight) and need to loose. ranting..... of all the side affects to have, I dont get the one I want.

anyways, please respond, post, whatever, and quell my fear of being a freakishly alone person once more for a disease that no one else seems to have. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks,
-S

SIcklyhatED · Feb 5, 2011

Hello, the name's Sara and I'm brand-spanking new here (though I've been creeping for awhile).
 Me in a nutshell: 17 (18 in 2 months), 5'1, Sr in highschool, diagnosed with CF at birth along with many of you, reside in sunny Arizona, half Ecuadorian with a lovely, huge Latin family, aspiring chef and medical mishap. I'm FREAKISHLY healthy, seriously. Doctors even question if I was given a correct diagnosis sometimes, but alas I'm stuck with these mutated genes.
 
 I've scoured these forums for any posts of any mention of anyone who has actually HAD an ED along with CF. I'm beginning to think I am the only inhabitant of this group. So, I'm reaching out.
 
 More or less: severe depression in elementary school (yes, little ones can get it to) with self-injury tendancies at at that tender age which sparked a full blown eating disorder in 7th grade. Through 8th/early freshman year it was bad. My lowest was 81 lbs, deliberatly, and would've gladly continued had my nosy doctor not tipped my mother off.
 So.
 Freshman through Sophomore year was a living hell. The tricky thing with eating disorders is that once caught, you switch tactics. I chose self-injury. The ED was put on the back burner for a few years.
 
 I switched Highschools, improved dramatically, then this summer I've begun to retreat back into eating disordered behavior with my highest around 123, currently 115.
 I've never, ever, never, ever ever had weight issues as far as I've known. I was pretty normal. my parents and doctors told me "eat whatever you want" which put a few pounds on me and my eyes were opened. funny that the very people who swore to not treat me as a textbook CF patient were doing just that...
 
 Sorry for the rant and massive info overload.
 I've:
 1. never met another CF patient
 2. have had very limited exposure and conversation with ED patients in real life.
 so naturally I'm needing some connection here.
 
 please tell me there's another CF patient out there, here, who has dealt with this: having an eating disorder. not just "people say i have one." "Everyone asks if I'm anorexic." No, actually living in that underworld, and dealing with the fact that you are a normal teenager who just so happens to have a disease, while wanting to loose a few pounds, but not being able to. i remember when my mother would cheerlead if I gained 2 pounds and freak if i lost 1....
 
 it's just extremely dificult to balance these 2 things together. one one hand my doctor and parents want me to maintain a weight, and on the other I know for a FACT that I'm at an unhealthy body composition (notice I dont say weight) and need to loose. ranting..... of all the side affects to have, I dont get the one I want.
 
 anyways, please respond, post, whatever, and quell my fear of being a freakishly alone person once more for a disease that no one else seems to have. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 Thanks,
 -S

catchastar · Feb 6, 2011

Hi -I wanted to respond since it doesn't look like anybody has yet. Even though I am quite a bit older than you, I definitely had some eating issues when I was in high school and continuing on into college.

Like you I was not at all affected on a daily basis by cf at that point - I was on the track team and like you was told I could eat whatever I wanted. However, depression over things (mostly relationship troubles) would cause me to try out things. Bulimia stuck for a few years during college and summer breaks. When I think back on it now I think a lot of it is wrapped up in being "naturally" thin because of pancreatic insufficiency that I thought that was "normal" and any weight gain was not acceptable. Not sure that it was a result of cf at all or even if cf entered into my thinking at that point. If there is such a thing, it was just a routine ED. I liked being thin. Nobody really came down on me for it - I don't think I really dipped too low. Just enough to make myself feel better.

In addition to meeting new people and expanding my circle of friends so that I was more content the one thing that really got me to stop was reading an article in a scientific magazine about all the damage that was done to the heart and esophagus - this actually scared me.

I reamined on the thin side for years and years and only within the past three years have put on extra weight. Whether it is age or the fact I stopped working and am not as active or finally taking my enzymes correctly or combination I'm not sure. The gain definitely bums me out, as I've out grown all of my pants and many tops but as the lung involvement has become worse (I'm looking at transplant evaluation) I've realized there are more important things than being thin. But it took me a LOOOONG time to get to this point...

Don't know if this helps you a lot cause I'm not in the throes of it now, but just wanted to share so you wouldn't think everyone with cf is comfortable gaining weight. (despite what the doctors say).

catchastar · Feb 6, 2011

Hi -I wanted to respond since it doesn't look like anybody has yet. Even though I am quite a bit older than you, I definitely had some eating issues when I was in high school and continuing on into college.

Like you I was not at all affected on a daily basis by cf at that point - I was on the track team and like you was told I could eat whatever I wanted. However, depression over things (mostly relationship troubles) would cause me to try out things. Bulimia stuck for a few years during college and summer breaks. When I think back on it now I think a lot of it is wrapped up in being "naturally" thin because of pancreatic insufficiency that I thought that was "normal" and any weight gain was not acceptable. Not sure that it was a result of cf at all or even if cf entered into my thinking at that point. If there is such a thing, it was just a routine ED. I liked being thin. Nobody really came down on me for it - I don't think I really dipped too low. Just enough to make myself feel better.

In addition to meeting new people and expanding my circle of friends so that I was more content the one thing that really got me to stop was reading an article in a scientific magazine about all the damage that was done to the heart and esophagus - this actually scared me.

I reamined on the thin side for years and years and only within the past three years have put on extra weight. Whether it is age or the fact I stopped working and am not as active or finally taking my enzymes correctly or combination I'm not sure. The gain definitely bums me out, as I've out grown all of my pants and many tops but as the lung involvement has become worse (I'm looking at transplant evaluation) I've realized there are more important things than being thin. But it took me a LOOOONG time to get to this point...

Don't know if this helps you a lot cause I'm not in the throes of it now, but just wanted to share so you wouldn't think everyone with cf is comfortable gaining weight. (despite what the doctors say).

catchastar · Feb 6, 2011

Hi -I wanted to respond since it doesn't look like anybody has yet. Even though I am quite a bit older than you, I definitely had some eating issues when I was in high school and continuing on into college.
 
 Like you I was not at all affected on a daily basis by cf at that point - I was on the track team and like you was told I could eat whatever I wanted. However, depression over things (mostly relationship troubles) would cause me to try out things. Bulimia stuck for a few years during college and summer breaks. When I think back on it now I think a lot of it is wrapped up in being "naturally" thin because of pancreatic insufficiency that I thought that was "normal" and any weight gain was not acceptable. Not sure that it was a result of cf at all or even if cf entered into my thinking at that point. If there is such a thing, it was just a routine ED. I liked being thin. Nobody really came down on me for it - I don't think I really dipped too low. Just enough to make myself feel better.
 
 In addition to meeting new people and expanding my circle of friends so that I was more content the one thing that really got me to stop was reading an article in a scientific magazine about all the damage that was done to the heart and esophagus - this actually scared me.
 
 I reamined on the thin side for years and years and only within the past three years have put on extra weight. Whether it is age or the fact I stopped working and am not as active or finally taking my enzymes correctly or combination I'm not sure. The gain definitely bums me out, as I've out grown all of my pants and many tops but as the lung involvement has become worse (I'm looking at transplant evaluation) I've realized there are more important things than being thin. But it took me a LOOOONG time to get to this point...
 
 Don't know if this helps you a lot cause I'm not in the throes of it now, but just wanted to share so you wouldn't think everyone with cf is comfortable gaining weight. (despite what the doctors say).

logansmom09 · Feb 8, 2011

Sara-My teenage son has CF. I've never dealt with CF myself nor had an eating disorder, but I think the best advice I can give you is to deal with the issues 100% separately. Posted on another thread for some help, and from responses I got and the experience itself, I honestly think that CF patients are extraordinarily smart. Start with an intellectual decision to separate the two issues, and define your plan of treatment from there. Best of luck, and best of health to you.

logansmom09 · Feb 8, 2011

Sara-My teenage son has CF. I've never dealt with CF myself nor had an eating disorder, but I think the best advice I can give you is to deal with the issues 100% separately. Posted on another thread for some help, and from responses I got and the experience itself, I honestly think that CF patients are extraordinarily smart. Start with an intellectual decision to separate the two issues, and define your plan of treatment from there. Best of luck, and best of health to you.

logansmom09 · Feb 8, 2011

Sara-My teenage son has CF. I've never dealt with CF myself nor had an eating disorder, but I think the best advice I can give you is to deal with the issues 100% separately. Posted on another thread for some help, and from responses I got and the experience itself, I honestly think that CF patients are extraordinarily smart. Start with an intellectual decision to separate the two issues, and define your plan of treatment from there. Best of luck, and best of health to you.

jenspoon · Feb 9, 2011

Hi Sara
You are definitely not alone. There are other people out there with eating disorders and CF. My daughter was one of those people. I have been thinking about a reply to your post and want you to know this reply comes from a very non judgmental position as a mum who had to weather more than a few storms and learn as much as possible along the way.

The one thing that really stood out in our journey through an eating disorder is that it is rarely about weight. It may be about feelings of loss of control in your life, possibly your CF has a lot to do with that or it may be other factors. As part of staying healthy with your CF there has probably been pressure to eat a certain way and maintain a certain weight or to gain weight. An ED feels like it gives you a measure of control in your life. The only sad thing about this is that Eating Disordered thinking will always tell you that any weight loss is not enough. You might have a goal weight but when this is reached you may want to set another, yet lower weight. It is just never enough. A few pounds is never enough and the Eating Disorder ultimately gains control.

I hope and pray you will seek help and encourage you to find a good counselor, someone outside the family with experience in Eating Disorders who can help you find a positive way through this. All the best in your journey and remember you are not alone.

jenspoon · Feb 9, 2011

Hi Sara
You are definitely not alone. There are other people out there with eating disorders and CF. My daughter was one of those people. I have been thinking about a reply to your post and want you to know this reply comes from a very non judgmental position as a mum who had to weather more than a few storms and learn as much as possible along the way.

The one thing that really stood out in our journey through an eating disorder is that it is rarely about weight. It may be about feelings of loss of control in your life, possibly your CF has a lot to do with that or it may be other factors. As part of staying healthy with your CF there has probably been pressure to eat a certain way and maintain a certain weight or to gain weight. An ED feels like it gives you a measure of control in your life. The only sad thing about this is that Eating Disordered thinking will always tell you that any weight loss is not enough. You might have a goal weight but when this is reached you may want to set another, yet lower weight. It is just never enough. A few pounds is never enough and the Eating Disorder ultimately gains control.

I hope and pray you will seek help and encourage you to find a good counselor, someone outside the family with experience in Eating Disorders who can help you find a positive way through this. All the best in your journey and remember you are not alone.

jenspoon · Feb 9, 2011

Hi Sara
 You are definitely not alone. There are other people out there with eating disorders and CF. My daughter was one of those people. I have been thinking about a reply to your post and want you to know this reply comes from a very non judgmental position as a mum who had to weather more than a few storms and learn as much as possible along the way.
 
 The one thing that really stood out in our journey through an eating disorder is that it is rarely about weight. It may be about feelings of loss of control in your life, possibly your CF has a lot to do with that or it may be other factors. As part of staying healthy with your CF there has probably been pressure to eat a certain way and maintain a certain weight or to gain weight. An ED feels like it gives you a measure of control in your life. The only sad thing about this is that Eating Disordered thinking will always tell you that any weight loss is not enough. You might have a goal weight but when this is reached you may want to set another, yet lower weight. It is just never enough. A few pounds is never enough and the Eating Disorder ultimately gains control.
 
 I hope and pray you will seek help and encourage you to find a good counselor, someone outside the family with experience in Eating Disorders who can help you find a positive way through this. All the best in your journey and remember you are not alone.

kirstynkoffs · Feb 10, 2011

I'm sorry I only have a minute to post but you ARE NOT ALONE. As a early teen I too suffered from an ED. I have my own theories similar to Jenspoon above that cf patients constantly hear about weight and also the enormity of a chronic illness from a young age, development of an ED takes some focus away from cf- you're sick with something other than cf. I could count the number of cf patients I have met face to face on one hand but personally I know one other girl who has/had a serious ED. Please know you are not alone. take care.

kirstynkoffs · Feb 10, 2011

I'm sorry I only have a minute to post but you ARE NOT ALONE. As a early teen I too suffered from an ED. I have my own theories similar to Jenspoon above that cf patients constantly hear about weight and also the enormity of a chronic illness from a young age, development of an ED takes some focus away from cf- you're sick with something other than cf. I could count the number of cf patients I have met face to face on one hand but personally I know one other girl who has/had a serious ED. Please know you are not alone. take care.

kirstynkoffs · Feb 10, 2011

I'm sorry I only have a minute to post but you ARE NOT ALONE. As a early teen I too suffered from an ED. I have my own theories similar to Jenspoon above that cf patients constantly hear about weight and also the enormity of a chronic illness from a young age, development of an ED takes some focus away from cf- you're sick with something other than cf. I could count the number of cf patients I have met face to face on one hand but personally I know one other girl who has/had a serious ED. Please know you are not alone. take care.

SIcklyhatED · Feb 16, 2011

Thank you for the replies everyone, they were very encouraging. Like i said before I've never been able to talk about these two things together and make any connections really. unfortunatly I dont think I'll ever be able to separate the two issues completely as I know they're connected on a deeper level. Although I wish I really could because it would make things much more simple.

I've always thought myself odd for having an ED along with a chronic illness that almost guarantees the opposite; it never occured to me that the constant focus on weight would drive one to an ED (it makes perfect sense. finally, an answer of some sorts).

I remember being terrified of doctor appointments when I was in the thick of it because of the weigh ins. I didn't want to get chewed out again about lossing weight or get sympathetic sighs. even now i still cringe and hope my parents get distracted when the number is read out (I can not WAIT until I'm 18 and they dont have to come....).

since I've never had any of the typical weight issues associated with CF shouldn't I be unrestrained from the typical worries of any weight loss? It seems unfair...

SIcklyhatED · Feb 16, 2011

Thank you for the replies everyone, they were very encouraging. Like i said before I've never been able to talk about these two things together and make any connections really. unfortunatly I dont think I'll ever be able to separate the two issues completely as I know they're connected on a deeper level. Although I wish I really could because it would make things much more simple.

I've always thought myself odd for having an ED along with a chronic illness that almost guarantees the opposite; it never occured to me that the constant focus on weight would drive one to an ED (it makes perfect sense. finally, an answer of some sorts).

I remember being terrified of doctor appointments when I was in the thick of it because of the weigh ins. I didn't want to get chewed out again about lossing weight or get sympathetic sighs. even now i still cringe and hope my parents get distracted when the number is read out (I can not WAIT until I'm 18 and they dont have to come....).

since I've never had any of the typical weight issues associated with CF shouldn't I be unrestrained from the typical worries of any weight loss? It seems unfair...

SIcklyhatED · Feb 16, 2011

Thank you for the replies everyone, they were very encouraging. Like i said before I've never been able to talk about these two things together and make any connections really. unfortunatly I dont think I'll ever be able to separate the two issues completely as I know they're connected on a deeper level. Although I wish I really could because it would make things much more simple.
 
 I've always thought myself odd for having an ED along with a chronic illness that almost guarantees the opposite; it never occured to me that the constant focus on weight would drive one to an ED (it makes perfect sense. finally, an answer of some sorts).
 
 I remember being terrified of doctor appointments when I was in the thick of it because of the weigh ins. I didn't want to get chewed out again about lossing weight or get sympathetic sighs. even now i still cringe and hope my parents get distracted when the number is read out (I can not WAIT until I'm 18 and they dont have to come....).
 
 since I've never had any of the typical weight issues associated with CF shouldn't I be unrestrained from the typical worries of any weight loss? It seems unfair...

strivingstar · May 7, 2011

Hi Sara. I just wanted to let you know that you are not alone. I'm now 30, diagnosed with CF as a baby and diagnosed with having ED. Generally my CF has been VERY good over the years which I am very thankful for. However in 2008 my ED finally pushed my CF. As you know the lower your BMI the more stress it puts on your lungs. In fall 2008 I was admitted into the hospital ED program on a full time basis which meant I had to take a leave of absence from work. I still go for meals and support while going to work which is a lot of work emotionally but I think it's the only way I can manage everything. I have a hard time disassociating myself away from either illness...I feel that they both define me...however I"m working with the psychiatrist to get past it.... Does it suck? Of course it does and it brings me down but talking to others about it always makes it seem less defeating. You never know what the future holds so always hold onto hope.

strivingstar · May 7, 2011

Hi Sara. I just wanted to let you know that you are not alone. I'm now 30, diagnosed with CF as a baby and diagnosed with having ED. Generally my CF has been VERY good over the years which I am very thankful for. However in 2008 my ED finally pushed my CF. As you know the lower your BMI the more stress it puts on your lungs. In fall 2008 I was admitted into the hospital ED program on a full time basis which meant I had to take a leave of absence from work. I still go for meals and support while going to work which is a lot of work emotionally but I think it's the only way I can manage everything. I have a hard time disassociating myself away from either illness...I feel that they both define me...however I"m working with the psychiatrist to get past it.... Does it suck? Of course it does and it brings me down but talking to others about it always makes it seem less defeating. You never know what the future holds so always hold onto hope.

With an eating disorder.

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