Re: Caution: Labeling individuals as a disease

May 23, 2006

>

> I am completely aware that everyone cares and loves themselves or

> their family member with this disease, so please don't get the wrong

> impression. I also know it's easy to get completely absorbed and

> overwhelmed by the daily challenges of this disease. I'm just asking

> that you please stop labeling yourself or someone else as a disease

> and take your individuality back.

I don't feel it removes my individuality. I'm sorry that it bothers

you so much.

By slapping the label on myself, I feel that I'm providing

visibility. Sure, I could say that I'm a " person with CD " , but

frankly, it's easier to say celiac than PWCD. We label ourselves all

the time. My labels often include pagan, goth, bisexual, celiac,

fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

Scout, over-read, and liberal--among countless others. I'm a sum of

many parts and I'm not going to deny one of those parts simply

because it makes someone uncomfortable.

ly, I've always found the " person with * " appellation to be far

less individualistic and incredibly generic.

ygg

May 23, 2006

>

> I am completely aware that everyone cares and loves themselves or

> their family member with this disease, so please don't get the wrong

> impression. I also know it's easy to get completely absorbed and

> overwhelmed by the daily challenges of this disease. I'm just asking

> that you please stop labeling yourself or someone else as a disease

> and take your individuality back.

I don't feel it removes my individuality. I'm sorry that it bothers

you so much.

By slapping the label on myself, I feel that I'm providing

visibility. Sure, I could say that I'm a " person with CD " , but

frankly, it's easier to say celiac than PWCD. We label ourselves all

the time. My labels often include pagan, goth, bisexual, celiac,

fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

Scout, over-read, and liberal--among countless others. I'm a sum of

many parts and I'm not going to deny one of those parts simply

because it makes someone uncomfortable.

ly, I've always found the " person with * " appellation to be far

less individualistic and incredibly generic.

ygg

May 23, 2006

>

> I am completely aware that everyone cares and loves themselves or

> their family member with this disease, so please don't get the wrong

> impression. I also know it's easy to get completely absorbed and

> overwhelmed by the daily challenges of this disease. I'm just asking

> that you please stop labeling yourself or someone else as a disease

> and take your individuality back.

I don't feel it removes my individuality. I'm sorry that it bothers

you so much.

By slapping the label on myself, I feel that I'm providing

visibility. Sure, I could say that I'm a " person with CD " , but

frankly, it's easier to say celiac than PWCD. We label ourselves all

the time. My labels often include pagan, goth, bisexual, celiac,

fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

Scout, over-read, and liberal--among countless others. I'm a sum of

many parts and I'm not going to deny one of those parts simply

because it makes someone uncomfortable.

ly, I've always found the " person with * " appellation to be far

less individualistic and incredibly generic.

ygg

May 23, 2006

YGG is right, I don't think of myself as only a disease or feel that

I have surrendered my individuality to celiac. It is nothing more

than a descriptive word like the infinite descriptors we all assign

ourselves everyday. It is one word that implies a great deal, so it

is perfect for a forum like this. Especially for those of us who

can't type. It appears often and it may be the only one used

because of the nature of the group. But that doesn't mean it's the

only one. I probably use it all the time here, but I rarely feel

the need to call myself celiac at work or at home. Just like I

would rarely call myself a geologist here. Doesn't mean that I am

not both. All of my adjectives make me an individual, including

celiac.

Lori

> >

> > I am completely aware that everyone cares and loves themselves or

> > their family member with this disease, so please don't get the

wrong

> > impression. I also know it's easy to get completely absorbed and

> > overwhelmed by the daily challenges of this disease. I'm just

asking

> > that you please stop labeling yourself or someone else as a

disease

> > and take your individuality back.

>

> I don't feel it removes my individuality. I'm sorry that it

bothers

> you so much.

>

> By slapping the label on myself, I feel that I'm providing

> visibility. Sure, I could say that I'm a " person with CD " , but

> frankly, it's easier to say celiac than PWCD. We label ourselves

all

> the time. My labels often include pagan, goth, bisexual, celiac,

> fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

> Scout, over-read, and liberal--among countless others. I'm a sum

of

> many parts and I'm not going to deny one of those parts simply

> because it makes someone uncomfortable.

>

> ly, I've always found the " person with * " appellation to be

far

> less individualistic and incredibly generic.

>

> ygg

>

May 23, 2006

YGG,

If you had cancer would you call your self " i'm cancer " ? Well, I

guess you would since you'd want to " slap a label on yourself and

provide visibility " .

Obviously, you missed the point. We all have attributes that make us

who we are as a person BUT we are people first. How is

describing " My husband who has celiac " " less individualistic and

incredibly generic " ? It's actually quite polite and a very

respectful way to describe him. He's not celiac. He's a man with

thoughts and feelings and everything else in-between who has celiac

disease. In my opinion, to minimize him to a disease is an insult to

him as a person.

> >

> > I am completely aware that everyone cares and loves themselves or

> > their family member with this disease, so please don't get the

wrong

> > impression. I also know it's easy to get completely absorbed and

> > overwhelmed by the daily challenges of this disease. I'm just

asking

> > that you please stop labeling yourself or someone else as a

disease

> > and take your individuality back.

>

> I don't feel it removes my individuality. I'm sorry that it

bothers

> you so much.

>

> By slapping the label on myself, I feel that I'm providing

> visibility. Sure, I could say that I'm a " person with CD " , but

> frankly, it's easier to say celiac than PWCD. We label ourselves

all

> the time. My labels often include pagan, goth, bisexual, celiac,

> fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

> Scout, over-read, and liberal--among countless others. I'm a sum

of

> many parts and I'm not going to deny one of those parts simply

> because it makes someone uncomfortable.

>

> ly, I've always found the " person with * " appellation to be

far

> less individualistic and incredibly generic.

>

> ygg

>

May 23, 2006

I don't think that anyone here does that outside of this sort of group. I certainly would never introduce my son to a new neighbor as "my son the Celiac" but I do it here so people know the context of whatever it is I'm talking about.

The bottom line, I think, is that if you dont' want to use that as a label don't. But don't tell others who don't mind using it not to, or even try to convince them not to. They are as committed to their way as you are to yours.

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Sent: Tuesday, May 23, 2006 12:43 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

YGG,If you had cancer would you call your self "i'm cancer"? Well, I guess you would since you'd want to "slap a label on yourself and provide visibility".Obviously, you missed the point. We all have attributes that make us who we are as a person BUT we are people first. How is describing "My husband who has celiac" "less individualistic and incredibly generic"? It's actually quite polite and a very respectful way to describe him. He's not celiac. He's a man with thoughts and feelings and everything else in-between who has celiac disease. In my opinion, to minimize him to a disease is an insult to him as a person. > >> > I am completely aware that everyone cares and loves themselves or> > their family member with this disease, so please don't get the wrong> > impression. I also know it's easy to get completely absorbed and> > overwhelmed by the daily challenges of this disease. I'm just asking> > that you please stop labeling yourself or someone else as a disease> > and take your individuality back.> > > I don't feel it removes my individuality. I'm sorry that it bothers > you so much.> > By slapping the label on myself, I feel that I'm providing > visibility. Sure, I could say that I'm a "person with CD", but > frankly, it's easier to say celiac than PWCD. We label ourselves all > the time. My labels often include pagan, goth, bisexual, celiac, > fibromite, four-eyes, eczematic, red-headed, intellectual, Girl > Scout, over-read, and liberal--among countless others. I'm a sum of > many parts and I'm not going to deny one of those parts simply > because it makes someone uncomfortable.> > ly, I've always found the "person with *" appellation to be far > less individualistic and incredibly generic.> > ygg>

May 23, 2006

I hope you're right with your assumptions that people don't talk like

that outside this chat group. Language " in-house " is different than

language " out-house " . I chat to this group how I talk in the outside

world and I guess assumed others did the same.

> > >

> > > I am completely aware that everyone cares and loves themselves

or

> > > their family member with this disease, so please don't get the

> wrong

> > > impression. I also know it's easy to get completely absorbed

and

> > > overwhelmed by the daily challenges of this disease. I'm just

> asking

> > > that you please stop labeling yourself or someone else as a

> disease

> > > and take your individuality back.

> >

> > I don't feel it removes my individuality. I'm sorry that it

> bothers

> > you so much.

> >

> > By slapping the label on myself, I feel that I'm providing

> > visibility. Sure, I could say that I'm a " person with CD " , but

> > frankly, it's easier to say celiac than PWCD. We label ourselves

> all

> > the time. My labels often include pagan, goth, bisexual,

celiac,

> > fibromite, four-eyes, eczematic, red-headed, intellectual, Girl

> > Scout, over-read, and liberal--among countless others. I'm a sum

> of

> > many parts and I'm not going to deny one of those parts simply

> > because it makes someone uncomfortable.

> >

> > ly, I've always found the " person with * " appellation to be

> far

> > less individualistic and incredibly generic.

> >

> > ygg

> >

>

May 23, 2006

Oh, I don't think that's a safe assumption at all!!! I talk about my stupid sister in law here all the time (the one who thinks we shouldn't ALL have to eat GF at family gatherings just bc the four year old has to...it cramps her style. Even though most of the stuff is naturally GF, anyway. She's a moron. Ok, maybe I do talk about her like that in the outside world too... hahaha....) Anyway, I think people say things here they would not say to people they actually know/face to face. In fact, now that I think about it I don't even think me son knows he has Celiac. He just knows he can't have flour or gluten! Of course, mostly he thinks that applies to food he doesn't like, but we're working on that "handy excuse..."

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Sent: Tuesday, May 23, 2006 2:07 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

I hope you're right with your assumptions that people don't talk like that outside this chat group. Language "in-house" is different than language "out-house". I chat to this group how I talk in the outside world and I guess assumed others did the same. > > >> > > I am completely aware that everyone cares and loves themselves or> > > their family member with this disease, so please don't get the > wrong> > > impression. I also know it's easy to get completely absorbed and> > > overwhelmed by the daily challenges of this disease. I'm just > asking> > > that you please stop labeling yourself or someone else as a > disease> > > and take your individuality back.> > > > > > I don't feel it removes my individuality. I'm sorry that it > bothers > > you so much.> > > > By slapping the label on myself, I feel that I'm providing > > visibility. Sure, I could say that I'm a "person with CD", but > > frankly, it's easier to say celiac than PWCD. We label ourselves > all > > the time. My labels often include pagan, goth, bisexual, celiac, > > fibromite, four-eyes, eczematic, red-headed, intellectual, Girl > > Scout, over-read, and liberal--among countless others. I'm a sum > of > > many parts and I'm not going to deny one of those parts simply > > because it makes someone uncomfortable.> > > > ly, I've always found the "person with *" appellation to be > far > > less individualistic and incredibly generic.> > > > ygg> >> > > > > > > >

May 23, 2006

I'm not demanding anything from anyone. I'm not taking anything away

from anyone. I'm expressing my opinion and originally I did it very

nice and polite manor. You are personally attacking me for my

views. Just because I'm not in line with others' thinking, does not

mean I'm not entitled to my views. My job training (in the mental

health profession) trained me not to label people. I was always told

to look at my clients as people who have an illness/disease. There

are other ways of thinking out there, Maureen, besides yours and your

personal employment experiences.

You have no right to personally attack me for my views. I thought we

were all mature adults here.........Having differences of opinions is

fine. It opens our eyes to other ways of thinking. But once you

start personally attacking me for them you've entered a new level.

> >

> > I'm baffled that people don't see the harm it does to people by

> > labeling them. Ask anyone in the medical profession or mental

health

> > care industry what harm labeling creates. It's multi-

dimentional!

> > These people are trained (not everywhere, all the time - -nothing

is

> > perfect) to not ignore the person and label them by their

> > disease/diagnosis.

> >

>

> What absolute NONSENSE!!

>

> I spent over 16 years in front line healthcare - ICU, Pediatrics,

> oncology and PSYCHIATRY. Not only do the staff -from Chief of Staff

to

> trainee nurses - constantly use labels to indicate which patient

they

> mean, many of the patients self-identify with labels. The best

example

> of fighting back against this political correctness nonsense I ever

> heard was one of our most frequent patients on the psyche inpatient

> unit. She HATED the term " mental illness " and often said " I'm not

> mentally ill, I'm crazy! "

>

> It's too bad that you don't understand the harm you are doing to

this

> group - I don't think anyone here considers other members of the

group

> to be nothing more than a collection of damaged villi, but we need

to

> be able to accurately and quickly communicate and using " celiac " in

> front of son/daughter/self/spouse results in clearer communication.

> Many people here live in mixed households - both diagnosed celiacs

and

> those who do not share the condition - and they need a simple way to

> indicate which category of person they are writing about. Why take

> that away from them? Why demand they type 10 words instead of 2? I

> don't think you have the right to demand that, or to make people

> self-conscious about their speech patterns. If the commonly

acceptedly

> style of communication here offends you that much, perhaps this

group

> isn't the right place for you.

>

> Maureen

>

May 23, 2006

Now that I think about it, I don't think my daughter knows she has

Celiac, either.

> > > >

> > > > I am completely aware that everyone cares and loves

themselves

> or

> > > > their family member with this disease, so please don't get

the

> > wrong

> > > > impression. I also know it's easy to get completely absorbed

> and

> > > > overwhelmed by the daily challenges of this disease. I'm

just

> > asking

> > > > that you please stop labeling yourself or someone else as a

> > disease

> > > > and take your individuality back.

> > >

> > > I don't feel it removes my individuality. I'm sorry that it

> > bothers

> > > you so much.

> > >

> > > By slapping the label on myself, I feel that I'm providing

> > > visibility. Sure, I could say that I'm a " person with CD " ,

but

> > > frankly, it's easier to say celiac than PWCD. We label

ourselves

> > all

> > > the time. My labels often include pagan, goth, bisexual,

> celiac,

> > > fibromite, four-eyes, eczematic, red-headed, intellectual,

Girl

> > > Scout, over-read, and liberal--among countless others. I'm a

sum

> > of

> > > many parts and I'm not going to deny one of those parts simply

> > > because it makes someone uncomfortable.

> > >

> > > ly, I've always found the " person with * " appellation to

be

> > far

> > > less individualistic and incredibly generic.

> > >

> > > ygg

> > >

> >

May 23, 2006

This is getting really personal, and sort of snippy (I'm not directing that at you, , but the thread in general.)

I'd like to propose that we stop talking about this, before feelings get REALLY hurt, and move on to what the intention of the board is. To support each other in dealing with Celiac in our daily lives, no matter who/what that is (for me, it's dealing with my young son having this condition and navigating all that entails)

I just hate to see this escalate into some bitter argument, and I feel like this is headed that way.

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Sent: Tuesday, May 23, 2006 2:21 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

I'm not demanding anything from anyone. I'm not taking anything away from anyone. I'm expressing my opinion and originally I did it very nice and polite manor. You are personally attacking me for my views. Just because I'm not in line with others' thinking, does not mean I'm not entitled to my views. My job training (in the mental health profession) trained me not to label people. I was always told to look at my clients as people who have an illness/disease. There are other ways of thinking out there, Maureen, besides yours and your personal employment experiences. You have no right to personally attack me for my views. I thought we were all mature adults here.........Having differences of opinions is fine. It opens our eyes to other ways of thinking. But once you start personally attacking me for them you've entered a new level. > >> > I'm baffled that people don't see the harm it does to people by > > labeling them. Ask anyone in the medical profession or mental health > > care industry what harm labeling creates. It's multi-dimentional! > > These people are trained (not everywhere, all the time - -nothing is > > perfect) to not ignore the person and label them by their > > disease/diagnosis. > > > > What absolute NONSENSE!!> > I spent over 16 years in front line healthcare - ICU, Pediatrics,> oncology and PSYCHIATRY. Not only do the staff -from Chief of Staff to> trainee nurses - constantly use labels to indicate which patient they> mean, many of the patients self-identify with labels. The best example> of fighting back against this political correctness nonsense I ever> heard was one of our most frequent patients on the psyche inpatient> unit. She HATED the term "mental illness" and often said "I'm not> mentally ill, I'm crazy!"> > It's too bad that you don't understand the harm you are doing to this> group - I don't think anyone here considers other members of the group> to be nothing more than a collection of damaged villi, but we need to> be able to accurately and quickly communicate and using "celiac" in> front of son/daughter/self/spouse results in clearer communication.> Many people here live in mixed households - both diagnosed celiacs and> those who do not share the condition - and they need a simple way to> indicate which category of person they are writing about. Why take> that away from them? Why demand they type 10 words instead of 2? I> don't think you have the right to demand that, or to make people> self-conscious about their speech patterns. If the commonly acceptedly> style of communication here offends you that much, perhaps this group> isn't the right place for you.> > Maureen>

May 23, 2006

- As a teacher we still label kids but this is not the sole definition of the person. Even as simple as she is a freshman, he is an artist...and yes, he is autistic, and she is an at-risk teen. Your point makes sense--we are people first! I totally agree--don't worry. I hope you didn't think I was challenging you--when I asked what made you uncomfortable--I wanted to know why it bothered you and now I do. wrote: ,As a teacher, I would think you would clearly understand the harm created by labeling children. That flows into adulthood, too. Having celiac is not ignoring that part of you as a person. But you're a person, first. That is what I wanted to bring to light. Nothing about having Celiac Disease makes me uncomfortable. I don't expect people to change their ways and that's OK with me. I'm not trying to rally people to change their ways. However, people should know that there are other sides of the story and be respectful and understanding that there are other views out there. > I have really enjoyed being a part of this chat group. The support > and heated debates are inspiring. I've been struggling to post this > comment for a while because I'm not sure how people will take it. > But here it goes............> > Everytime someone referrs to themselves or someone else as "celiac" > really upsets me. Please remember that we are people first and the > disease is only a fraction of who we are. We are people who have > celiac or someone who has celiac. By stating "I'm celiac or "my > celiac someone" labels you as a disease and takes away your > individuality.> > I am completely aware that

everyone cares and loves themselves or > their family member with this disease, so please don't get the wrong > impression. I also know it's easy to get completely absorbed and > overwhelmed by the daily challenges of this disease. I'm just asking > that you please stop labeling yourself or someone else as a disease > and take your individuality back.> > There are many creative people in this chat group and maybe someone > could think of some nice, short abreviations or symbols that we can > use to clarify who we're refering to, in our emails, with this > disease.> > Best Regards,> > > > > > >

May 23, 2006

I would have to agree with Maureen here too. I have worked in the

health care field for over ten years and the majority of speaking

about patients/clients is using " labels. " Although it isn't

necessarily appropriate, it happens...A LOT!! With that said, I

don't think that this is something to disagree about. We all have

our opinions, but also I do think that a lot of people speak

differently here than we would normally...only because it's a lot

quicker and more to the point for someone to understand. I am

actually happy to have the label of having celiac disease because

for me, it's been a VERY long road of complications and not knowing

that finally got me to this place. So, I guess to each our own.

Rhiannon

> > >

> > > I'm baffled that people don't see the harm it does to people

by

> > > labeling them. Ask anyone in the medical profession or mental

> health

> > > care industry what harm labeling creates. It's multi-

> dimentional!

> > > These people are trained (not everywhere, all the time - -

nothing

> is

> > > perfect) to not ignore the person and label them by their

> > > disease/diagnosis.

> > >

> >

> > What absolute NONSENSE!!

> >

> > I spent over 16 years in front line healthcare - ICU, Pediatrics,

> > oncology and PSYCHIATRY. Not only do the staff -from Chief of

Staff

> to

> > trainee nurses - constantly use labels to indicate which patient

> they

> > mean, many of the patients self-identify with labels. The best

> example

> > of fighting back against this political correctness nonsense I

ever

> > heard was one of our most frequent patients on the psyche

inpatient

> > unit. She HATED the term " mental illness " and often said " I'm not

> > mentally ill, I'm crazy! "

> >

> > It's too bad that you don't understand the harm you are doing to

> this

> > group - I don't think anyone here considers other members of the

> group

> > to be nothing more than a collection of damaged villi, but we

need

> to

> > be able to accurately and quickly communicate and using " celiac "

in

> > front of son/daughter/self/spouse results in clearer

communication.

> > Many people here live in mixed households - both diagnosed

celiacs

> and

> > those who do not share the condition - and they need a simple

way to

> > indicate which category of person they are writing about. Why

take

> > that away from them? Why demand they type 10 words instead of 2?

I

> > don't think you have the right to demand that, or to make people

> > self-conscious about their speech patterns. If the commonly

> acceptedly

> > style of communication here offends you that much, perhaps this

> group

> > isn't the right place for you.

> >

> > Maureen

> >

>

May 23, 2006

Thanks for your response, .

> > I have really enjoyed being a part of this chat group. The

> support

> > and heated debates are inspiring. I've been struggling to post

> this

> > comment for a while because I'm not sure how people will take

it.

> > But here it goes............

> >

> > Everytime someone referrs to themselves or someone else

as " celiac "

> > really upsets me. Please remember that we are people first and

the

> > disease is only a fraction of who we are. We are people who have

> > celiac or someone who has celiac. By stating " I'm celiac or " my

> > celiac someone " labels you as a disease and takes away your

> > individuality.

> >

> > I am completely aware that everyone cares and loves themselves or

> > their family member with this disease, so please don't get the

> wrong

> > impression. I also know it's easy to get completely absorbed and

> > overwhelmed by the daily challenges of this disease. I'm just

> asking

> > that you please stop labeling yourself or someone else as a

disease

> > and take your individuality back.

> >

> > There are many creative people in this chat group and maybe

someone

> > could think of some nice, short abreviations or symbols that we

can

> > use to clarify who we're refering to, in our emails, with this

> > disease.

> >

> > Best Regards,

> >

May 23, 2006

You know you're right! I never really knew I had a " disease " until

I was 9 or 10 yrs old(diagnosed at 16 months). We had to write a

paper for science class on a disease and my father suggested I write

about Celiac. Until that point, I was " on a special diet. " I knew

if I ate something with gluten in it I would get sick. That was

enough for me.

And as far as in-house vs out-of-house talk. I definitely don't go

around introducing myself as a celiac. If someone asks if I would

like to eat something and I can't, I politely say " No, thanks " or " I

can't eat wheat. " depending on the situation and who is asking. If

its someone I don't know I just politely decline the offer, if it is

a friend asking I state the facts. In fact, it happened the other

day at work. When I said I can't eat wheat, my co-worker asked why

is that? And I told her I had Celiac Disease. She said, " No

kidding, my father was just diagnosed 8 months ago! "

So to me, depending on the situation I will mention that " I have

Celiac Disease. " I think its a good way to make people aware of CD

and to meet newbies! And working in the food industry, these types

of situations are present themselves quite often.

I have never even thought of it as labeling myself. And I've never

met anyone that has treated me differently after finding out I have

CD.

But I do agree that it is interesting to hear others opinions.

> > > > >

> > > > > I am completely aware that everyone cares and loves

> themselves

> > or

> > > > > their family member with this disease, so please don't get

> the

> > > wrong

> > > > > impression. I also know it's easy to get completely

absorbed

> > and

> > > > > overwhelmed by the daily challenges of this disease. I'm

> just

> > > asking

> > > > > that you please stop labeling yourself or someone else as

a

> > > disease

> > > > > and take your individuality back.

> > > >

> > > > I don't feel it removes my individuality. I'm sorry that it

> > > bothers

> > > > you so much.

> > > >

> > > > By slapping the label on myself, I feel that I'm providing

> > > > visibility. Sure, I could say that I'm a " person with CD " ,

> but

> > > > frankly, it's easier to say celiac than PWCD. We label

> ourselves

> > > all

> > > > the time. My labels often include pagan, goth, bisexual,

> > celiac,

> > > > fibromite, four-eyes, eczematic, red-headed, intellectual,

> Girl

> > > > Scout, over-read, and liberal--among countless others. I'm

a

> sum

> > > of

> > > > many parts and I'm not going to deny one of those parts

simply

> > > > because it makes someone uncomfortable.

> > > >

> > > > ly, I've always found the " person with * " appellation

to

> be

> > > far

> > > > less individualistic and incredibly generic.

> > > >

> > > > ygg

> > > >

> > >

May 23, 2006

Well, this has really sparked a whole other interesting line of conversation. I wonder how many kids know they have Celiac vs that they can't eat certain things. Hmm...I thought maybe I was being a bad parent by not thoroughly educating my son on his condition, but then I figured I don't even get it half the time so how is he supposed to?? I stick with you can't eat wheat or gluten and it's good enough for him.

When we go places I do the same as you. I tell people he can't eat that, he has a wheat allergy or something. If they ask more, I tell them. Otherwise I just leave it alone. And I cannot BELIEVE the number of people who either ask, or say, "Oh, does he have Celiac?" I'd never heard of this crazy thing before he was diagnosed and it seems like more and more people are talking about it when I bring it up...weird....

I suppose it's like buying an odd colored car. You never saw it on the road before, until you bought yours. Then you see the same thing everywhere!

From: SillyYaks [mailto:SillyYaks ] On Behalf Of Sent: Tuesday, May 23, 2006 4:13 PMTo: SillyYaks Subject: Re: Caution: Labeling individuals as a disease

You know you're right! I never really knew I had a "disease" until I was 9 or 10 yrs old(diagnosed at 16 months). We had to write a paper for science class on a disease and my father suggested I write about Celiac. Until that point, I was "on a special diet." I knew if I ate something with gluten in it I would get sick. That was enough for me.And as far as in-house vs out-of-house talk. I definitely don't go around introducing myself as a celiac. If someone asks if I would like to eat something and I can't, I politely say "No, thanks" or "I can't eat wheat." depending on the situation and who is asking. If its someone I don't know I just politely decline the offer, if it is a friend asking I state the facts. In fact, it happened the other day at work. When I said I can't eat wheat, my co-worker asked why is that? And I told her I had Celiac Disease. She said, "No kidding, my father was just diagnosed 8 months ago!"So to me, depending on the situation I will mention that "I have Celiac Disease." I think its a good way to make people aware of CD and to meet newbies! And working in the food industry, these types of situations are present themselves quite often.I have never even thought of it as labeling myself. And I've never met anyone that has treated me differently after finding out I have CD. But I do agree that it is interesting to hear others opinions. > > > > >> > > > > I am completely aware that everyone cares and loves > themselves > > or> > > > > their family member with this disease, so please don't get > the > > > wrong> > > > > impression. I also know it's easy to get completely absorbed > > and> > > > > overwhelmed by the daily challenges of this disease. I'm > just > > > asking> > > > > that you please stop labeling yourself or someone else as a > > > disease> > > > > and take your individuality back.> > > > > > > > > > > > I don't feel it removes my individuality. I'm sorry that it > > > bothers > > > > you so much.> > > > > > > > By slapping the label on myself, I feel that I'm providing > > > > visibility. Sure, I could say that I'm a "person with CD", > but > > > > frankly, it's easier to say celiac than PWCD. We label > ourselves > > > all > > > > the time. My labels often include pagan, goth, bisexual, > > celiac, > > > > fibromite, four-eyes, eczematic, red-headed, intellectual, > Girl > > > > Scout, over-read, and liberal--among countless others. I'm a > sum > > > of > > > > many parts and I'm not going to deny one of those parts simply > > > > because it makes someone uncomfortable.> > > > > > > > ly, I've always found the "person with *" appellation to > be > > > far > > > > less individualistic and incredibly generic.> > > > > > > > ygg> > > >> > > > > > > > > > > > > > > > > > > > > > > >

May 23, 2006

I guess I am proud too. But more importantly, I'm grateful to be " celiac "

and not have any of the other diseases that they tested me for first!

On Tue, 23 May 2006 17:26:35 -0000, seamaiden399 wrote

> I too would say that I am " proud " to be celiac. Not necessarily

> because having celiac makes me jump up and down with joy, because

> let's face it, life would be less complicated without it. But it

> seems to me that the alternative is to be ashamed about this aspect

> of who I am- and I refuse to do that! So, I will embrace

> my " sillyyak " ness and do the best I can with it- and if that means

> becoming a gourmet chef and learning a ridiculous amount of

> international recipes, then so much the better. I also know that I

> am a full, complex person who is not just a disease- but it's also

> the case that in most of my life, I just say " I have a wheat

> allergy " or " I can't eat gluten " and it feels refreshing and

> somewhat cathartic to say " I am a Celiac/ sillyyak " - you guys know

> what that means, you know who I am, you know what problems I have

> that we all share, and you know that I too know the joys of walking

> down that aisle and finding a new gluten free goodie. If you'll

> notice, I like to use the word SillyYak sometimes, rather than

> Celiac, because I think it refers more strongly to being a member of

> this community, which has been a very positive experience for me

> that I associate with good things. But, I don't shy away from the

> term Celiac either. I think this forum leads all of us to use

> different language than we might in the " Real world " - but I hope

> that none of us are limiting ourselves to our identity as someone

> with celiac. I think our individual personality comes across

> regardless of the word used or not used. That being said- there is

> one thing I hate- the idea of Celiac as a Disease, a disease that

> goes in and out of remission like Cancer or Leukemia. My doctor uses

> this terminology, and it bothers me, whether it is factual or not.

> The reason is that having had this condition since I was three, and

> I refuse to accept that I am not a healthy person. I follow the

> diet, I try to be healthy, I feel good and don't let celiac or

> anything else get in the way of what I want to do- to me, it's not a

> disease, it's a genetic condition/ way of life. I realize it is just

> semantics, but sometimes semantics are all we have. This is just my

> personal philosophy.

>

> >

> > Wow - I never would have thought someone would be *proud* to be

> > celiac. Goes to show you that you learn something new everyday.

> >

> > Cathy

>

May 23, 2006

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!

SPRING IS HERE!

May 23, 2006

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!

SPRING IS HERE!

May 23, 2006

My boys are 7 and 10 and have been GF for 3 years. Both have known since the beginning why they are GF, why they needed a biopsy etc... Mind you, my MIL has celiacs too so they knew the term beforehand. I am, to a fault, honest with my children and don't particularly believe in shielding from the stuff they encounter. [ I'm not going to let them go to a R rated movie, so they won't encounter stuff they aren't ready for purposefully, but if they hear adults talking and want an explanation of something, I will oblige (in their language).] So far they seem to not be too terribly traumatized. I cannot see the advantage of shielding them from a diagnosis that they are going to live with forever. When would be the right time to "spring it on them"? I really wouldn't let others comments rock you to the point that you doubt your decision making as a mom. It sounds like you are doing just fine for YOUR family.

As for the PC "person with celiac disease" stuff - whatever rocks your boat I guess. My dh is a diabetic, my kids are celiacs, I'm a neurotic, anxiety meds taking atheist... If hearing us defined that way makes someone not want to play with us, so be it, they're probably not much fun anyway.

Michele

Bridget,

I have a couple of questions because I have a 4 year old who we are trying to train from the start what she can and cannot eat and the reasons behind it.

How old is your son and does he question why his diet is different? Does he understand why he can't eat with the group or has that come up?

We have a mixed household and my daughter at not quite 2 1/2 was diagnosed and we have been open with her from the start. She understands she has Celiac and that if she stays GF she can be healthy and if she eats gluten then she will get sick. We have told her this from the start and she has been okay with it. She knows that her diet is different but she also knows why it is different and what will happen if she eats gluten. With that being said she is not consumed by it and worrying about it all the time. If a snack comes up then she will ask or she has even already told people she can't have it because it has gluten and been right! But of course on the other hand almost any snack people are going to give her has gluten in it so it wasn't much of a gamble to say she was right.

I do not want to harm my daughter in anyway and now with this whole conversation going I am afraid I have found myself questioning my whole process AGAIN!

May 23, 2006

Sounds to me like you’re raising

your daughter just right! The more that they are able to advocate for

themselves, the more confidence they have, the better!

Laurie

lbilyeu@...

From: SillyYaks

[mailto:SillyYaks ] On Behalf

Of Marvin and Bjorge

Sent: Tuesday, May 23, 2006 5:32

PM

To: SillyYaks

Subject: Re: Caution:

Labeling individuals as a disease

Bridget,

I have a couple of questions because I

have a 4 year old who we are trying to train from the start what she can and

cannot eat and the reasons behind it.

How old is your son and does he question

why his diet is different? Does he understand why he can't eat with the

group or has that come up?

We have a mixed household and my daughter

at not quite 2 1/2 was diagnosed and we have been open with her from the

start. She understands she has Celiac and that if she stays GF she can be

healthy and if she eats gluten then she will get sick. We have told her

this from the start and she has been okay with it. She knows that her

diet is different but she also knows why it is different and what will happen

if she eats gluten. With that being said she is not consumed by it and

worrying about it all the time. If a snack comes up then she will ask or

she has even already told people she can't have it because it has gluten and

been right! But of course on the other hand almost any snack people are

going to give her has gluten in it so it wasn't much of a gamble to say she was

right.

I do not want to harm my daughter in

anyway and now with this whole conversation going I am afraid I have found

myself questioning my whole process AGAIN!

SPRING IS HERE!

May 23, 2006

Yikes! Lots of opinions on this one, sorry to make you read one

more. But as someone who is also a mental health professional, I

just couldn't stop myself from chiming in.

Yes, we are taught not to identify someone by their condition - the

term used for the preferred method is called " person first

language " . The idea is to not objectify, embarrass, or insult

someone by implying that you view them as a condition first and a

human being second. And I agree with that.

However, I think it is misapplied in this situation. The folks in

this group who use the terms are referring to themselves and their

loved ones. No one is in any danger of objectifying, embarassing,

or insulting anyone. And we do it for one reason and one reason

only - bonding. It is a common thread that we all share and that

allows us to feel like we are not alone. That is why we all sign

in. It is a quick and easy way to say with just one word " I know

what you're dealing with and you know what I'm dealing with " . When

someone writes " my celiac son " , we all immediately identify with

that child, feel for that child, and cheer that child and his family

on.

I understand and appreciate your concern, and I know it took a lot

of guts to voice it. But I think your concern is misplaced here.

> > I have really enjoyed being a part of this chat group. The

> support

> > and heated debates are inspiring. I've been struggling to post

> this

> > comment for a while because I'm not sure how people will take

it.

> > But here it goes............

> >

> > Everytime someone referrs to themselves or someone else

as " celiac "

> > really upsets me. Please remember that we are people first and

the

> > disease is only a fraction of who we are. We are people who

have

> > celiac or someone who has celiac. By stating " I'm celiac or " my

> > celiac someone " labels you as a disease and takes away your

> > individuality.

> >

> > I am completely aware that everyone cares and loves themselves

or

> > their family member with this disease, so please don't get the

> wrong

> > impression. I also know it's easy to get completely absorbed

and

> > overwhelmed by the daily challenges of this disease. I'm just

> asking

> > that you please stop labeling yourself or someone else as a

disease

> > and take your individuality back.

> >

> > There are many creative people in this chat group and maybe

someone

> > could think of some nice, short abreviations or symbols that we

can

> > use to clarify who we're refering to, in our emails, with this

> > disease.

> >

> > Best Regards,

> >

May 23, 2006