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Re: Help on my e-mail.

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I think you have written a fantastic letter. You have described it

in words much better than I could have. Just reading it makes me

want to cry, that anyone should have to deal with this on a daily

basis, especially a young person. I am now 50 and can remember how

it was when I was a teenager.

I think the only change I see, would be in the first line. You might

change it to say:

Since I was eight years old, I've been tormented with a

psychological, neurological or physiological disorder that most of us

with this problem know as Soft Sound Sensitivity Syndrome.

The only reason I say this, is that we are not sure if it is

psychological or caused by a physical condition, so this might get

more attention from other doctors, besides just mental health doctors.

Anyway, other than that, I think it is great. Hopefully our efforts

will help us find answers.

>

> I have decided to help in the flurry of e-mail sending on the

sixteenth, but I have never before in my life written an email to a

doctor about anything like this, so anybody with experience, it would

be appreciated if you could help me sort of proofread this, tell me

if I might want to change something, or if it's fine on its own.

Please? And thank you!

>

>

> Since I was eight years old, I've been tormented with a

psychological disorder that most of us with this problem know as Soft

Sound Sensitivity Syndrome.

>

> This is an odd syndrome to say the least, and I recognize that.

Small sounds, such as smacking lips when eating, chewing food,

sniffing, clearing throats and even breathing heavily- yes, breathing-

overwhelms me with anxiety and other intense emotions that are not

quite easy to describe.

>

> To me and the others like me on the Soundsensitivity board on

Yahoo, these sounds are not just annoyances. They're much, much worse

than that. Being a sixteen year old girl, my worst fears should be

murderers, rapists, not living a decent life or being able to fend

for myself, but instead, my worst fears have become the noises which

I have listed above, the noises that happen constantly, every day of

my life.

>

> The only way to escape these noises is to avoid them. I don't live

as great of a social life as I should. I avoid the movie theaters,

restaurants and other generally quiet places where I know the noises

might occur. I can't even eat dinner with my family because they make

me want to kill somebody, that somebody often times being myself.

Classrooms are unbearable; I have to keep my ears plugged, and half

of the time I can't hear the teacher. I have to work twice as hard as

any other student to be able to pay attention to the instructor as

opposed to the noises my classmates are making- it's a wonder I'm

pulling off As and Bs.

>

> My family, for a long time, passed it off as something that would

go away with puberty. They tried to ignore it, as it is not commonly

known of, and many humans have a tendency to be slightly neophobic. I

have gone to many doctors, all of which have recommended therapists,

when the truth is, I cannot control my reactions to these noises (the

reactions can often be self-harmful, whether it's just clenching,

biting my lip, or digging my nails into my palms. Anything to let out

the negative stimuli). My parents recognize this now and are trying

to do all they can to help, but the truth is, you can't ask every

person you ever meet in life to never smack their lips, chew loudly,

sniff, clear their throats or breathe softer. No matter what, one

side of the two suffers.

>

> This change was not by any means gradual. In fact, it almost

happened over night; I remember specifically one day making it

through the day in my third grade classroom with no problems, and the

next clenching my ears, begging my classmates to stop sniffing- and

they didn't even know they were. I was an eight year old, and I

wanted to die. As a sixteen year old now, still suffering and trying

to live a normal life, it still makes me want to die. No matter what

therapy I've tried, listening to pink noise or exposing myself more

to the noises, it just gets worse.

>

> I am the only one in my family with this problem, but I am not the

only one in the world. Thanks to the Soundsensitivity forum on Yahoo,

I have managed to find others with my problem. The board was not a

help for fixing my problem, as we don't know how, but it was a help

to know that I'm not alone.

>

> I am not one crazy teenage girl looking for attention. I am not

just one out of five or so people in the world with an odd condition.

I am not a statistic. I am a living, breathing human being, suffering

every day of her life from a traumatizing disorder. All the others

with Soft Sound Sensitivity Syndrome and myself need help if we can

ever dream of  living normal lives, and anything you can do to help

us, any study you can conduct, any treatment that may make this a

little easier on us, would be appreciated to no end.

>

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I agree. Your letter is wonderful. But you could even just leave out any speculation of it being psychological, neurological, or physiological. It infers that someone already has figured it out. That's what we need them to do. But everything else is great.

Kathy

-----Original Message-----From: Soundsensitivity [mailto:Soundsensitivity ]On Behalf Of tmpendleton_1Sent: Thursday, August 14, 2008 9:12 AMTo: Soundsensitivity Subject: Re: Help on my e-mail.

I think you have written a fantastic letter. You have described it in words much better than I could have. Just reading it makes me want to cry, that anyone should have to deal with this on a daily basis, especially a young person. I am now 50 and can remember how it was when I was a teenager. I think the only change I see, would be in the first line. You might change it to say:Since I was eight years old, I've been tormented with a psychological, neurological or physiological disorder that most of us with this problem know as Soft Sound Sensitivity Syndrome. The only reason I say this, is that we are not sure if it is psychological or caused by a physical condition, so this might get more attention from other doctors, besides just mental health doctors.Anyway, other than that, I think it is great. Hopefully our efforts will help us find answers.>> I have decided to help in the flurry of e-mail sending on the sixteenth, but I have never before in my life written an email to a doctor about anything like this, so anybody with experience, it would be appreciated if you could help me sort of proofread this, tell me if I might want to change something, or if it's fine on its own. Please? And thank you!> > > Since I was eight years old, I've been tormented with a psychological disorder that most of us with this problem know as Soft Sound Sensitivity Syndrome.> > This is an odd syndrome to say the least, and I recognize that. Small sounds, such as smacking lips when eating, chewing food, sniffing, clearing throats and even breathing heavily- yes, breathing-overwhelms me with anxiety and other intense emotions that are not quite easy to describe.> > To me and the others like me on the Soundsensitivity board on Yahoo, these sounds are not just annoyances. They're much, much worse than that. Being a sixteen year old girl, my worst fears should be murderers, rapists, not living a decent life or being able to fend for myself, but instead, my worst fears have become the noises which I have listed above, the noises that happen constantly, every day of my life.> > The only way to escape these noises is to avoid them. I don't live as great of a social life as I should. I avoid the movie theaters, restaurants and other generally quiet places where I know the noises might occur. I can't even eat dinner with my family because they make me want to kill somebody, that somebody often times being myself. Classrooms are unbearable; I have to keep my ears plugged, and half of the time I can't hear the teacher. I have to work twice as hard as any other student to be able to pay attention to the instructor as opposed to the noises my classmates are making- it's a wonder I'm pulling off As and Bs.> > My family, for a long time, passed it off as something that would go away with puberty. They tried to ignore it, as it is not commonly known of, and many humans have a tendency to be slightly neophobic. I have gone to many doctors, all of which have recommended therapists, when the truth is, I cannot control my reactions to these noises (the reactions can often be self-harmful, whether it's just clenching, biting my lip, or digging my nails into my palms. Anything to let out the negative stimuli). My parents recognize this now and are trying to do all they can to help, but the truth is, you can't ask every person you ever meet in life to never smack their lips, chew loudly, sniff, clear their throats or breathe softer. No matter what, one side of the two suffers.> > This change was not by any means gradual. In fact, it almost happened over night; I remember specifically one day making it through the day in my third grade classroom with no problems, and the next clenching my ears, begging my classmates to stop sniffing- and they didn't even know they were. I was an eight year old, and I wanted to die. As a sixteen year old now, still suffering and trying to live a normal life, it still makes me want to die. No matter what therapy I've tried, listening to pink noise or exposing myself more to the noises, it just gets worse.> > I am the only one in my family with this problem, but I am not the only one in the world. Thanks to the Soundsensitivity forum on Yahoo, I have managed to find others with my problem. The board was not a help for fixing my problem, as we don't know how, but it was a help to know that I'm not alone.> > I am not one crazy teenage girl looking for attention. I am not just one out of five or so people in the world with an odd condition. I am not a statistic. I am a living, breathing human being, suffering every day of her life from a traumatizing disorder. All the others with Soft Sound Sensitivity Syndrome and myself need help if we can ever dream of living normal lives, and anything you can do to help us, any study you can conduct, any treatment that may make this a little easier on us, would be appreciated to no end.>

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Thank you so much, and I'm glad it was overall decent. I've just changed the original to the line that you suggested, and I think you're right; not only is it more correct, but it sounds better. xD Thanks again, and I'm positive that this email idea will work out well.Subject: Re: Help on my e-mail.To: Soundsensitivity Date: Thursday, August 14, 2008, 8:12 AM

I think you have written a fantastic letter. You have described it

in words much better than I could have. Just reading it makes me

want to cry, that anyone should have to deal with this on a daily

basis, especially a young person. I am now 50 and can remember how

it was when I was a teenager.

I think the only change I see, would be in the first line. You might

change it to say:

Since I was eight years old, I've been tormented with a

psychological, neurological or physiological disorder that most of us

with this problem know as Soft Sound Sensitivity Syndrome.

The only reason I say this, is that we are not sure if it is

psychological or caused by a physical condition, so this might get

more attention from other doctors, besides just mental health doctors.

Anyway, other than that, I think it is great. Hopefully our efforts

will help us find answers.

>

> I have decided to help in the flurry of e-mail sending on the

sixteenth, but I have never before in my life written an email to a

doctor about anything like this, so anybody with experience, it would

be appreciated if you could help me sort of proofread this, tell me

if I might want to change something, or if it's fine on its own.

Please? And thank you!

>

>

> Since I was eight years old, I've been tormented with a

psychological disorder that most of us with this problem know as Soft

Sound Sensitivity Syndrome.

>

> This is an odd syndrome to say the least, and I recognize that.

Small sounds, such as smacking lips when eating, chewing food,

sniffing, clearing throats and even breathing heavily- yes, breathing-

overwhelms me with anxiety and other intense emotions that are not

quite easy to describe.

>

> To me and the others like me on the Soundsensitivity board on

Yahoo, these sounds are not just annoyances. They're much, much worse

than that. Being a sixteen year old girl, my worst fears should be

murderers, rapists, not living a decent life or being able to fend

for myself, but instead, my worst fears have become the noises which

I have listed above, the noises that happen constantly, every day of

my life.

>

> The only way to escape these noises is to avoid them. I don't live

as great of a social life as I should. I avoid the movie theaters,

restaurants and other generally quiet places where I know the noises

might occur. I can't even eat dinner with my family because they make

me want to kill somebody, that somebody often times being myself.

Classrooms are unbearable; I have to keep my ears plugged, and half

of the time I can't hear the teacher. I have to work twice as hard as

any other student to be able to pay attention to the instructor as

opposed to the noises my classmates are making- it's a wonder I'm

pulling off As and Bs.

>

> My family, for a long time, passed it off as something that would

go away with puberty. They tried to ignore it, as it is not commonly

known of, and many humans have a tendency to be slightly neophobic. I

have gone to many doctors, all of which have recommended therapists,

when the truth is, I cannot control my reactions to these noises (the

reactions can often be self-harmful, whether it's just clenching,

biting my lip, or digging my nails into my palms. Anything to let out

the negative stimuli). My parents recognize this now and are trying

to do all they can to help, but the truth is, you can't ask every

person you ever meet in life to never smack their lips, chew loudly,

sniff, clear their throats or breathe softer. No matter what, one

side of the two suffers.

>

> This change was not by any means gradual. In fact, it almost

happened over night; I remember specifically one day making it

through the day in my third grade classroom with no problems, and the

next clenching my ears, begging my classmates to stop sniffing- and

they didn't even know they were. I was an eight year old, and I

wanted to die. As a sixteen year old now, still suffering and trying

to live a normal life, it still makes me want to die. No matter what

therapy I've tried, listening to pink noise or exposing myself more

to the noises, it just gets worse.

>

> I am the only one in my family with this problem, but I am not the

only one in the world. Thanks to the Soundsensitivity forum on Yahoo,

I have managed to find others with my problem. The board was not a

help for fixing my problem, as we don't know how, but it was a help

to know that I'm not alone.

>

> I am not one crazy teenage girl looking for attention. I am not

just one out of five or so people in the world with an odd condition.

I am not a statistic. I am a living, breathing human being, suffering

every day of her life from a traumatizing disorder. All the others

with Soft Sound Sensitivity Syndrome and myself need help if we can

ever dream of living normal lives, and anything you can do to help

us, any study you can conduct, any treatment that may make this a

little easier on us, would be appreciated to no end.

>

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