Re: Peoples reaction to Achalasia

[Guest guest]

I have learned who my true friends are through this disorder. We all

know the ones. They no we suffer they don't dwell on it cuz they

know that would wound what pride we do have but they also know the

FACE that says holly cow coming threw I am going to blow LOL. I have

learned to ignore the rest I posted recently about Family and how

angry I was about it and several here understood but also told me

that sometimes it is better to just limit what you tell people. to

me life is to short to worry about them so I have just concentrated

on my kids and husband. For example I had my Barrium swallow done

today they found fairly good size bulge not as bad as some. My Mom

said well if your food is just sitting there then why are you still

gaining weight. Ya think I needed to hear that LOL. Lot's of love

Tamara

>

> I am curious to know if others have a problem convincing friends,

> family and others what Achalasia is and how real it is.

>

> Do you get the " You made that up " look?

>

> Do you get 'You mean you can't swallow anything? "

>

> do people ask you what you can and cannot eat ALL THE TIME!!!?

>

> generally are you met with people who just don't get it and how do

you

> handle it?

>

[Guest guest]

Hi Debbie,

I am not sure if the following is a correct statement, or just something to think about. There seems to be some "gender bending" here. While anorexia and bulimia can affect both men and women alike, but because it is practically always women, it is the women Achalasians who have more trouble in relating to others about the disease than men. Society is to blame here. If a man has Achalasia, and it is explained, people generally listen and try to understand. A woman in the same position, has to deal with society's predisposition to thinking that the female Achalasian is just trying to cover-up their having anorexia or bulimia. People do not listen, and do not want to hear the truth when they already believe something else to be true.

I think that this is so commonplace, from reading posts here, that I am not convinced you can universally blame people for not understanding. In the last 25 years or so (in thinking about high profile cases like poor Carpenter who died from anorexia), that the American public has become aware of the dangers of those two disorders, and we are constantly barraged with photos and videos of "twenty-something" actresses denying they have eating disorders while looking like they are coming out of a concentration camp from World War II.

I am not stating that these people are correct to be thinking this way about Achalasians. Far from it. It is not an easy disease to understand. How long did it take ourselves or our family physicians to understand it as we first developed symptoms? One can hardly expect people who don't have the disease or who lives with someone who has it, to understand the disease. Seeing you having trouble eating or regurgitating makes them think anorexia or bulimia automatically. It is up to us to educate them and get them past this stereotyping. Nobody is going to do it for us.

I'm not saying I have the answers, just thoughts.

In a message dated 8/14/2006 11:43:10 P.M. Eastern Standard Time, dromangirl@... writes:

I am curious to know if others have a problem convincing friends, family and others what Achalasia is and how real it is. Do you get the "You made that up"look?Do you get 'You mean you can't swallow anything?"do people ask you what you can and cannot eat ALL THE TIME!!!?generally are you met with people who just don't get it and how do you handle it?

[Guest guest]

My responses have been more in the GRERD line. People

always know someone who has had this and you soon know

they are referring to GERD.

is right, they can't be expected to know about

something that is so rare they've never heard of it before.

I have gotten over being upset about it, and use every

opportunity to explain the difference to make people more

aware of the disease. You have to walk a fine line here

because you don't want people saying "poor thing" etc and

become a bore with your friends, but I think it is important

to make them understand the differences.

I have like many of you had to explain it to doctors in

other fields that have not heard of it. Just recently I

was discussing with a doctor increasing a medication I am

on, and I commented that what bothered me most was whether

that medication was sitting in my esophagus and what damage

it might do there. He had been told and it was on my records

that I had achalasia, but it had not made an impression on him.

His response to my concern was, "oh, if you swallow it, it's

going to your stomach". I didn't back off from explaining to

him in detail why his statement was wrong. This time he

really listened and I'll bet you he went home and looked it

up.

I think it is important for all of us and those to come to

educate as many people as we can without becoming

obnoxious.

Maggie

Alabama

[Guest guest]

what horrid coworkers !

Nasty remarks are so rude..

>

> You do get to know who your true friends are with this disease.

They

> believe you are suffering. No one at my work believed me. They

> thought I didn't want to eat. They just didn't get it and some made

> very nasty remarks to me. When I had my dilatation and I could eat

> again, they suddenly began to believe me.

> Life is short and I don't worry about what others think concerning

my

> achalasia.

> My best wishes to you.

> Hugs,

> Anita

>

[Guest guest]

I got the stares from my family, when I pause during eating, and

then the “Are you ok”? Yes I’ve gotten the “Its not

that bad is it”? I’ve also told people that I go to CCF for my treatment,

and I get the “Well there are perfectly good docs around here, why go so

out of your way?” UGH, yes its all frustrating some times.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of dromangirl

Sent: Monday, August 14, 2006 11:42 PM

achalasia

Subject: Peoples reaction to Achalasia

I am curious to know if others have a problem

convincing friends,

family and others what Achalasia is and how real it is.

Do you get the " You made that up " look?

Do you get 'You mean you can't swallow anything? "

do people ask you what you can and cannot eat ALL THE TIME!!!?

generally are you met with people who just don't get it and how do you

handle it?

[Guest guest]

I haven't had any strange or bad reactions to my diagnosis at all.

But, I'm very new at this -- just got the diagnosis last month. I've

only had big problems since last December. I was told it was reflux

which people understand. So at first my family just thought of 'A' as

a type of reflux. But now they all get it's a muscle problem and food

can't get into my stomach. No one has ever questioned it. But I do

get the 'can you eat this?' questions all the time.

My big worry is with my three kids though. They're ages 9, 6, and 3.

The oldest seems to understand what happening and can even explain it

to people. I just wanted to make sure they understood why Mommy use

to threw up after dinner. Now that I've gotten better about how to

eat, that doesn't happen as much. Although they do get tired of

waiting for Mommy to finish eating. Oh well.

-Kathleen in Madison

>

> I am curious to know if others have a problem convincing friends,

> family and others what Achalasia is and how real it is.

>

> Do you get the " You made that up " look?

>

> Do you get 'You mean you can't swallow anything? "

>

> do people ask you what you can and cannot eat ALL THE TIME!!!?

>

> generally are you met with people who just don't get it and how do

you

> handle it?

>

[Guest guest]

You should see the look gets when she tells people she can't (sorry for saying this at breakfast time *check local listings*) throw up. Since she's had her Hellar she can't. So then she has to go into explaining Achalasia and her surgeries. People are like, " I've never heard of such a thing " , in other words " The look! "

- Husband of

On 8/14/06, dromangirl <dromangirl@...> wrote:

I am curious to know if others have a problem convincing friends, family and others what Achalasia is and how real it is. Do you get the " You made that up " look?Do you get 'You mean you can't swallow anything? "

do people ask you what you can and cannot eat ALL THE TIME!!!?generally are you met with people who just don't get it and how do you handle it?

[Guest guest]

LOL yeah lets see Saturday LOL.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of

L. Warren

Sent: Tuesday, August 15, 2006 7:58 AM

achalasia

Subject: Re: Peoples reaction to Achalasia

You should see the look gets when she tells people she

can't (sorry for saying this at breakfast time *check local listings*) throw

up. Since she's had her Hellar she can't. So then she has to go into

explaining Achalasia and her surgeries. People are like, " I've never

heard of such a thing " , in other words " The look! "

- Husband of

On 8/14/06, dromangirl <dromangirl@...> wrote:

I am curious to know if others

have a problem convincing friends,

family and others what Achalasia is and how real it is.

Do you get the " You made that up " look?

Do you get 'You mean you can't swallow anything? "

do people ask you what you can and cannot eat ALL THE TIME!!!?

generally are you met with people who just don't get it and how do you

handle it?

[Guest guest]

Debbie,

I was born in Brooklyn, and I don't have to tell you that nobody steps on us!!!!

I keep on starting to write to you, and each time you post another message in response to everyone who has written to you, I start all over again.

I agree with everything you have written. Of course some people are apathetic, so if it doesn't affect them, they can care less. Its human nature.

Oh, I see you just posted again. I better wait and look at it later, or I'll be starting all over again.

Most importantly, for your own well being, you must be strong enough, at meals, to take your own bloody time, or just push the food away. We all know the consequences of rushing to keep up, and not having enough to drink.

We'll talk more. I now live in Jericho, LI.

In a message dated 8/15/2006 12:00:06 P.M. Eastern Daylight Time, dromangirl@... writes:

- Thanks for sharing your thoughte what you say is so true and I agree 100 percent but it is still aggravating I suppose I should lighten up on people:)>> > Hi Debbie,> > I am not sure if the following is a correct statement, or just something > to think about. There seems to be some "gender bending" here. While > anorexia and bulimia can affect both men and women alike, but because it is > practically always women, it is the women Achalasians who have more trouble in > relating to others about the disease than men. Society is to blame here. If a man > has Achalasia, and it is explained, people generally listen and try to > understand. A woman in the same position, has to deal with society's > predisposition to thinking that the female Achalasian is just trying to cover-up their > having anorexia or bulimia. People do not listen, and do not want to hear > the truth when they already believe something else to be true. > > I think that this is so commonplace, from reading posts here, that I am > not convinced you can universally blame people for not understanding. In the > last 25 years or so (in thinking about high profile cases like poor > Carpenter who died from anorexia), that the American public has become aware of > the dangers of those two disorders, and we are constantly barraged with > photos and videos of "twenty-something" actresses denying they have eating > disorders while looking like they are coming out of a concentration camp from World > War II. > > I am not stating that these people are correct to be thinking this way > about Achalasians. Far from it. It is not an easy disease to understand. > How long did it take ourselves or our family physicians to understand it as we > first developed symptoms? One can hardly expect people who don't have the > disease or who lives with someone who has it, to understand the disease. > Seeing you having trouble eating or regurgitating makes them think anorexia or > bulimia automatically. It is up to us to educate them and get them past this > stereotyping. Nobody is going to do it for us.> > I'm not saying I have the answers, just thoughts.> > > > In a message dated 8/14/2006 11:43:10 P.M. Eastern Standard Time, > dromangirl@... writes:> > > > > I am curious to know if others have a problem convincing friends, > family and others what Achalasia is and how real it is. > > Do you get the "You made that up"look?> > Do you get 'You mean you can't swallow anything?"> > do people ask you what you can and cannot eat ALL THE TIME!!!?> > generally are you met with people who just don't get it and how do you > handle it?>

[Guest guest]

In the past, my pediatrician thought i was bulimic. I was really offended and very angry. Also my parents also thought i had a psychological eating disorder as well and didn't believe till i had to literally show them that i can't swallow by trying to eat dinner and put a waste basket for...well...when the time comes. Everyone thought my Achalasia was psychological because achalasia is gradually and in the beginning i was able to eat well, then they were times i had to regurgitate everything and then i started using warm water...etc. you all know the process. Also in regards to my friends, and they are my friends for a long time, but they still don't really understand my condition fully. When i try to explain it to them...i feel like the info i give them goes in one ear and out the other....i think some of my friends who studied nursing or physiology in college understood this disorder at a biological level.

But at least my friends thought it wasn't an eating disorder.

[Guest guest]

I agree, its hard to get people to understand the disorder

completely. I think someone else with it is the only true person that understands.

Maybe our spouses understand, because they live with us and deal with the

doctor scene and all of that.

C Warren

Co-Founder

www.achalasia.us

From:

achalasia [mailto:achalasia ] On Behalf Of is

Madayag

Sent: Tuesday, August 15, 2006 9:00 AM

achalasia

Subject: Re: Peoples reaction to Achalasia

In the past, my pediatrician thought i was bulimic. I

was really offended and very angry. Also my parents also thought i had a

psychological eating disorder as well and didn't believe till i had to

literally show them that i can't swallow by trying to eat dinner and put a

waste basket for...well...when the time comes. Everyone thought my

Achalasia was psychological because achalasia is gradually and in the

beginning i was able to eat well, then they were times i had to

regurgitate everything and then i started using warm water...etc.

you all know the process. Also in regards to my friends, and

they are my friends for a long time, but they still don't really understand my

condition fully. When i try to explain it to them...i feel like the info

i give them goes in one ear and out the other....i think some of my friends who

studied nursing or physiology in college understood this disorder at a

biological level. But at least my friends thought it wasn't an eating

disorder.

[Guest guest]

Hey Debbie - that's why we are all here. I have had A for a very long

time, I come from a family of nurses and social workers so they do

understand the 'mechanics' of it. My parents fortunately never fed into

the psychological thing even when the first doctor they took me to told

them I had (get this...) a 'Rat's Tail' esophagus and that it was very

common in girls, puberty the whole thing - what a quack. It took

several years but my mother knew that the whole regurgitating during

the night thing was not psychological.

Most of the time now it's not much of a problem, I just tell people I

have a swallowing disorder and almost inevitably I'll get the 'oh,

yeah - I know someone who has that' and I just come right out and tell

them, 'yeah, probably not' and let it go from there.

Like you, if I get too much crap or if I have to convince my boss (very

work driven, doesn't understand, NEVER takes sick time) I just show

them my very nice open Heller scar. Now there's one advantage to the

open heller, you get nice shock value from the scar!!

But, we do have each other and WE do know what it's like and we NEVER

give each other strange looks! (lol)

Welcome Aboard!!

Happy Swallowing

- in Va.

>

> I am curious to know if others have a problem convincing friends,

> family and others what Achalasia is and how real it is.

>

> Do you get the " You made that up " look?

>

> Do you get 'You mean you can't swallow anything? "

>

> do people ask you what you can and cannot eat ALL THE TIME!!!?

>

> generally are you met with people who just don't get it and how do

you

> handle it?

>

[Guest guest]

wow I am actually teary eyed at the fact that others get me!

This group is awesome

Where were you guys all my life!?

Brooklyn Debbie

> >

> > I am curious to know if others have a problem convincing

friends,

> > family and others what Achalasia is and how real it is.

> >

> > Do you get the " You made that up " look?

> >

> > Do you get 'You mean you can't swallow anything? "

> >

> > do people ask you what you can and cannot eat ALL THE TIME!!!?

> >

> > generally are you met with people who just don't get it and how

do

> you

> > handle it?

> >

>

[Guest guest]

I am often surprised when I come across a doctor who hasnt heard of

the disease but yes, we need to make others aware without being

obnoxious

>

> My responses have been more in the GRERD line. People

> always know someone who has had this and you soon know

> they are referring to GERD.

>

> is right, they can't be expected to know about

> something that is so rare they've never heard of it before.

> I have gotten over being upset about it, and use every

> opportunity to explain the difference to make people more

> aware of the disease. You have to walk a fine line here

> because you don't want people saying " poor thing " etc and

> become a bore with your friends, but I think it is important

> to make them understand the differences.

>

> I have like many of you had to explain it to doctors in

> other fields that have not heard of it. Just recently I

> was discussing with a doctor increasing a medication I am

> on, and I commented that what bothered me most was whether

> that medication was sitting in my esophagus and what damage

> it might do there. He had been told and it was on my records

> that I had achalasia, but it had not made an impression on him.

> His response to my concern was, " oh, if you swallow it, it's

> going to your stomach " . I didn't back off from explaining to

> him in detail why his statement was wrong. This time he

> really listened and I'll bet you he went home and looked it

> up.

>

> I think it is important for all of us and those to come to

> educate as many people as we can without becoming

> obnoxious.

>

> Maggie

> Alabama

>

[Guest guest]

" The look " is so insulting isn't it but like someone else said a

lot of people do noet know because there is no awareness of this

disease

>

> I am curious to know if others have a problem convincing friends,

> family and others what Achalasia is and how real it is.

>

> Do you get the " You made that up " look?

>

> Do you get 'You mean you can't swallow anything? "

>

> do people ask you what you can and cannot eat ALL THE TIME!!!?

>

> generally are you met with people who just don't get it and how do

you

> handle it?

>

[Guest guest]

- Thanks for sharing your thoughte what you say is so true

and I agree 100 percent but it is still aggravating I suppose I

should lighten up on people:)

>

>

> Hi Debbie,

>

> I am not sure if the following is a correct statement, or just

something

> to think about. There seems to be some " gender bending " here.

While

> anorexia and bulimia can affect both men and women alike, but

because it is

> practically always women, it is the women Achalasians who have

more trouble in

> relating to others about the disease than men. Society is to

blame here. If a man

> has Achalasia, and it is explained, people generally listen and

try to

> understand. A woman in the same position, has to deal with

society's

> predisposition to thinking that the female Achalasian is just

trying to cover-up their

> having anorexia or bulimia. People do not listen, and do not

want to hear

> the truth when they already believe something else to be true.

>

> I think that this is so commonplace, from reading posts here,

that I am

> not convinced you can universally blame people for not

understanding. In the

> last 25 years or so (in thinking about high profile cases like

poor

> Carpenter who died from anorexia), that the American public has

become aware of

> the dangers of those two disorders, and we are constantly

barraged with

> photos and videos of " twenty-something " actresses denying they

have eating

> disorders while looking like they are coming out of a

concentration camp from World

> War II.

>

> I am not stating that these people are correct to be thinking

this way

> about Achalasians. Far from it. It is not an easy disease to

understand.

> How long did it take ourselves or our family physicians to

understand it as we

> first developed symptoms? One can hardly expect people who

don't have the

> disease or who lives with someone who has it, to understand the

disease.

> Seeing you having trouble eating or regurgitating makes them

think anorexia or

> bulimia automatically. It is up to us to educate them and get

them past this

> stereotyping. Nobody is going to do it for us.

>

> I'm not saying I have the answers, just thoughts.

>

>

>

> In a message dated 8/14/2006 11:43:10 P.M. Eastern Standard Time,

> dromangirl@... writes:

>

>

>

>

> I am curious to know if others have a problem convincing friends,

> family and others what Achalasia is and how real it is.

>

> Do you get the " You made that up " look?

>

> Do you get 'You mean you can't swallow anything? "

>

> do people ask you what you can and cannot eat ALL THE TIME!!!?

>

> generally are you met with people who just don't get it and how

do you

> handle it?

>

[Guest guest]

Kathleen

When I was diagnosed in my twenties my doctor said it was something

I was born with and the manifestation of the disease would occur

during puberty, which it did for me but years later I find that

people like you and others are getting it way after puberty---

very interesting

In achalasia , " Kathleen R. " <eringobrough2@...>

wrote:

>

> I haven't had any strange or bad reactions to my diagnosis at

all.

> But, I'm very new at this -- just got the diagnosis last month.

I've

> only had big problems since last December. I was told it was

reflux

> which people understand. So at first my family just thought

of 'A' as

> a type of reflux. But now they all get it's a muscle problem and

food

> can't get into my stomach. No one has ever questioned it. But I

do

> get the 'can you eat this?' questions all the time.

>

> My big worry is with my three kids though. They're ages 9, 6, and

3.

> The oldest seems to understand what happening and can even explain

it

> to people. I just wanted to make sure they understood why Mommy

use

> to threw up after dinner. Now that I've gotten better about how

to

> eat, that doesn't happen as much. Although they do get tired of

> waiting for Mommy to finish eating. Oh well.

>

> -Kathleen in Madison

>

>

> >

> > I am curious to know if others have a problem convincing

friends,

> > family and others what Achalasia is and how real it is.

> >

> > Do you get the " You made that up " look?

> >

> > Do you get 'You mean you can't swallow anything? "

> >

> > do people ask you what you can and cannot eat ALL THE TIME!!!?

> >

> > generally are you met with people who just don't get it and how

do

> you

> > handle it?

> >

>

[Guest guest]

Anita- I dont worry so much about what theysay abput me as much as . I worry about Achalasia beiing something they should be aware of and taken seriously thanks for your reply:) <empirelimo@...> wrote: what horrid coworkers !Nasty remarks are so rude..>> You do get to know who your true friends are with this disease. They >

believe you are suffering. No one at my work believed me. They > thought I didn't want to eat. They just didn't get it and some made > very nasty remarks to me. When I had my dilatation and I could eat > again, they suddenly began to believe me. > Life is short and I don't worry about what others think concerning my > achalasia.> My best wishes to you.> Hugs,> Anita>

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Scent- The old me would have said "People suck!" the new me says "People need to be aware!scent4u18 <honey-les@...> wrote: You do get to know who your true friends are with this disease. They believe you are suffering. No one at my work believed me. They thought I didn't want to eat. They just didn't get it and some made very nasty remarks to me. When I had my dilatation and I could eat again, they suddenly began to believe me. Life is short and I don't worry about what others think concerning my

achalasia.My best wishes to you.Hugs,Anita

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Oh Tamara, I can sure relate to that comment from your mother. My daughter has said the same thing to me, but worse is when doctors tell me, "it can't be too bad, you are gaining so much weight." There are still so many things about this A that I don't understand. Carol in ColoradoTamara <tmrwasden@...> wrote: I have learned who my true friends are through this disorder. We all know the ones. They no we suffer they don't dwell on it cuz they know that would

wound what pride we do have but they also know the FACE that says holly cow coming threw I am going to blow LOL. I have learned to ignore the rest I posted recently about Family and how angry I was about it and several here understood but also told me that sometimes it is better to just limit what you tell people. to me life is to short to worry about them so I have just concentrated on my kids and husband. For example I had my Barrium swallow done today they found fairly good size bulge not as bad as some. My Mom said well if your food is just sitting there then why are you still gaining weight. Ya think I needed to hear that LOL. Lot's of love Tamara>> I am curious to know if others have a problem convincing friends, > family and others what Achalasia is and how real it is.

> > Do you get the "You made that up"look?> > Do you get 'You mean you can't swallow anything?"> > do people ask you what you can and cannot eat ALL THE TIME!!!?> > generally are you met with people who just don't get it and how do you > handle it?>

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[Guest guest]

wrote:

A woman in the same

position, has to deal with society's predisposition to thinking that

the female Achalasian is just trying to cover-up their having anorexia

or bulimia.

I believe that is part of the problem. A woman is more likely to have

her symptoms dismissed by a doctor as being "hysterical." Did you know

that the word hysterical shares the same root as hysterectomy? Both

words are from a root that means the womb. Hysteria was originally a

term applied to woman who were suffering a "disturbance of the womb."

The womb was viewed as being a strong source of emotion in woman. Men

of course were never thought to have that problem. Today we say "it is

in your head" but often the gender bias is carried over to the new

terminology. Today when a doctor writes in a chart, "hysterical" he

knows it is not the womb causing the problem, but he still is biased by

the views of those that came before him. It isn't just the doctors that

are biased, we all are. We can know about the problem and try to do

better, but we are all biased. Even woman are biased to believe these

things about other woman.

You don't have to be woman for people to think you are somehow weak in

mind or spirit or you would overcome the problem. People may be more

willing to view a man's problem as real, but we pay a price for that.

Even in our own minds we are bothered that we have this weakness that

prevents us from enjoying something so basic as eating. We are bothered

if others can see our struggle. Do "real men" obsess about their health

problems? Do they join support groups and if so, do they "share?" How

can we condemn others for thinking what we also think.

What can any of us do about it. Probably not much. I try to not care

about it. Those that love me, love me even so. Those that don't were

always suspect anyway. (grin) Love is sometimes misguided but it is

still love.

notan

[Guest guest]

That is interesting. I'm 40 years old and never had any trouble

eating or swallowing until last December. It just seems so strange

to me that something that I've had no trouble with, never gave a

thought to for 40 years suddenly starts going wrong. I think that

is what amazes people most when I tell them.

Actually I mentioned 'A' to a friend yesterday and today she has

sent me e-mail about the danger of floride in the water. She thinks

that may have contributed to my problem. Either that or (according

to her) it could be the flu vaccination I got last winter. Since I

can't explain why it's happening people tend to fill in the blanks.

-Kathleen

> > >

> > > I am curious to know if others have a problem convincing

> friends,

> > > family and others what Achalasia is and how real it is.

> > >

> > > Do you get the " You made that up " look?

> > >

> > > Do you get 'You mean you can't swallow anything? "

> > >

> > > do people ask you what you can and cannot eat ALL THE TIME!!!?

> > >

> > > generally are you met with people who just don't get it and

how

> do

> > you

> > > handle it?

> > >

> >

>

[Guest guest]

Dear Kathleen, 40 is actually a very common time of life to start with achalasia. I was that age myself when symptoms started to appear and before that I had always eaten normally. Love from Ann XX"Kathleen R." <eringobrough2@...> wrote: That is interesting. I'm 40 years old and never had any trouble eating or swallowing until last December. It just seems so strange to me

that something that I've had no trouble with, never gave a thought to for 40 years suddenly starts going wrong. I think that is what amazes people most when I tell them. Actually I mentioned 'A' to a friend yesterday and today she has sent me e-mail about the danger of floride in the water. She thinks that may have contributed to my problem. Either that or (according to her) it could be the flu vaccination I got last winter. Since I can't explain why it's happening people tend to fill in the blanks.-Kathleen> > >> > > I am curious to know if others have a problem convincing > friends, > > > family and others what Achalasia is and how real it is. > > > > > > Do you get the "You made that up"look?> > > > > > Do you get 'You mean you can't swallow anything?">

> > > > > do people ask you what you can and cannot eat ALL THE TIME!!!?> > > > > > generally are you met with people who just don't get it and how > do > > you > > > handle it?> > >> >>

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[Guest guest]

Hello pegster@...,

In reference to your comment:

Oh MY GOD! Get a new doctor Maggie!

Peg, maybe I didn't explain that very well, this doctor was not

a doctor that I see on a regular basis, but an orthopedic

surgeon that I was seeing for a knee problem. My GP is well

aware of achalasia and did in fact tell me that he thought I

had a motility disorder that was not well known and made the

appointment for me at UAB where I was officially diagnosed.

I was really not surprised that the orthopedic guy was not knowledgeable about this disease since some GI's aren't.

The notation on my chart had been made a few years ago

when I saw him for a broken bone in my foot. Maybe my

next appointment should be with a brain specialist. LOL

Maggie

[Guest guest]

Oh MY GOD! Get a new doctor Maggie!

>

> My responses have been more in the GRERD line. People

> always know someone who has had this and you soon know

> they are referring to GERD.

>

> is right, they can't be expected to know about

> something that is so rare they've never heard of it before.

> I have gotten over being upset about it, and use every

> opportunity to explain the difference to make people more

> aware of the disease. You have to walk a fine line here

> because you don't want people saying " poor thing " etc and

> become a bore with your friends, but I think it is important

> to make them understand the differences.

>

> I have like many of you had to explain it to doctors in

> other fields that have not heard of it. Just recently I

> was discussing with a doctor increasing a medication I am

> on, and I commented that what bothered me most was whether

> that medication was sitting in my esophagus and what damage

> it might do there. He had been told and it was on my records

> that I had achalasia, but it had not made an impression on him.

> His response to my concern was, " oh, if you swallow it, it's

> going to your stomach " . I didn't back off from explaining to

> him in detail why his statement was wrong. This time he

> really listened and I'll bet you he went home and looked it

> up.

>

> I think it is important for all of us and those to come to

> educate as many people as we can without becoming

> obnoxious.

>

> Maggie

> Alabama

>