Re: Harmful intent of noise makers

[Guest guest]

One time my wife told a "friend" of ours about my sound sensitivity. The next time we went to their house, what does the schmuck do but go to the refrigerator and get a big crisp apple and sit next to me and eat it in my ear. I left and never saw him again. Not everyone is a moron like him, but I just chose not to say anything about it. Mike From: christyw383

To: Soundsensitivity Sent: Friday, February 17, 2012 3:12 PM Subject: Harmful intent of noise makers

I do feel this way also! I have always felt that the person making the noise is doing it on purpose to push my buttons and that if I asked them to stop or tried to explain my "condition" to them that they would then, in turn, do it louder or be more aggressive about it. That is why I have never said a word to anyone outside of my family about it.

[Guest guest]

This happened to me tonight. A Guy I know, was sitting with a friend. taps

out of habit and I just reach over and pat him on the hand and he stops. I do

this with everyone. I overheard his frfiend say " why does she keep doing that

to you " I tried to explain. He started doing it on purpose. I said " No, I'm

seriouse you have to stop I'm getting really upset " This made him laugh and do

it more. I grabbed his hands and told him to leave. He still thought I was

joking. I went in to my office and printed out the best description for

Misophonia with my triggers. After he read it, he felt really bad. He promised

never to tap or let anyone else tap around me. Keep a print out on you at all

times:-)

Sent from my Samsung Interceptâ„¢

[Guest guest]

Donelle,That was a very insightful story. Most people think we are just kidding about this. They may act out of confusion or embarrassment and have no idea how much they are upsetting us. It is outside of most peoples experience and like all phobias and obsessions, does not seem rational, because it isn't. I envy your courage in speaking up. I need to do it more. I am the one that is always embarrassed and ashamed of my condition and hate to put people out. But I am really encouraged by your friend 's response. If more people understood this it would go a long way towards making this a livable condition and increase our ability to socialize like normal

people. Educating the public will be a huge plus for us. Handing out printed material is a great idea. Can I ask you what printed material you showed him? Maybe we can get someone articulate like Dr. , Adah or Heidi to write a concise piece that we can hand out to people. I have been handed material by others who are impaired in some way, usually asking for money to help, but explaining their condition and some understanding. I have faith that the majority of people will respond in a mature manner. If they don't. we need to either disconnect or punch them it the nose:)Mike To: Soundsensitivity Sent: Sunday, February 19, 2012 5:26 AM Subject: Re: Harmful intent of noise makers

This happened to me tonight. A Guy I know, was sitting with a friend. taps out of habit and I just reach over and pat him on the hand and he stops. I do this with everyone. I overheard his frfiend say "why does she keep doing that to you" I tried to explain. He started doing it on purpose. I said "No, I'm seriouse you have to stop I'm getting really upset" This made him laugh and do it more. I grabbed his hands and told him to leave. He still thought I was joking. I went in to my office and printed out the best description for Misophonia with my triggers. After he read it, he felt really bad. He promised never to tap or let anyone else tap around me. Keep a print out on you at all times:-)

Sent from my Samsung Interceptâ„¢

[Guest guest]

There is a letter that has been composed for just this purpose. We are in the final stages of editing it and it should be ready to go up on this website very soon... We are also working on a document to present to a doctor or other health care professional who is unaware of Misophonia and all its implications...this is also almost ready. Both of these letters/documents will be available to all of you and can be edited by you to fit your own personal situation.Look for these to appear soon...I'm guessing in another couple days. Kessler>> Donelle,> > That was a very insightful story. Most people think we are just kidding about this. They may act out of confusion or embarrassment and have no idea how much they are upsetting us. It is outside of most peoples experience and like all phobias and obsessions, does not seem rational, because it isn't. > > I envy your courage in speaking up. I need to do it more. I am the one that is always embarrassed and ashamed of my condition and hate to put people out. > > But I am really encouraged by your friend 's response. If more people understood this it would go a long way towards making this a livable condition and increase our ability to socialize like normal people. > Educating the public will be a huge plus for us. Handing out printed material is a great idea. > Can I ask you what printed material you showed him? > > Maybe we can get someone articulate like Dr. , Adah or Heidi to write a concise piece that we can hand out to people. > I have been handed material by others who are impaired in some way, usually asking for money to help, but explaining their condition and some understanding. > I have faith that the majority of people will respond in a mature manner. > If they don't. we need to either disconnect or punch them it the nose:)> > Mike>  >  > > > ________________________________> To: Soundsensitivity > Sent: Sunday, February 19, 2012 5:26 AM> Subject: Re: Harmful intent of noise makers> > >  > This happened to me tonight. A Guy I know, was sitting with a friend. taps out of habit and I just reach over and pat him on the hand and he stops. I do this with everyone. I overheard his frfiend say "why does she keep doing that to you" I tried to explain. He started doing it on purpose. I said "No, I'm seriouse you have to stop I'm getting really upset" This made him laugh and do it more. I grabbed his hands and told him to leave. He still thought I was joking. I went in to my office and printed out the best description for Misophonia with my triggers. After he read it, he felt really bad. He promised never to tap or let anyone else tap around me. Keep a print out on you at all times:-)> > Sent from my Samsung Intercept™>

[Guest guest]

well said mike.

Subject: Re: Re: Harmful intent of noise makersTo: "Soundsensitivity " <Soundsensitivity >Date: Sunday, February 19, 2012, 5:11 AM

Donelle,

That was a very insightful story. Most people think we are just kidding about this. They may act out of confusion or embarrassment and have no idea how much they are upsetting us. It is outside of most peoples experience and like all phobias and obsessions, does not seem rational, because it isn't.

I envy your courage in speaking up. I need to do it more. I am the one that is always embarrassed and ashamed of my condition and hate to put people out.

But I am really encouraged by your friend 's response. If more people understood this it would go a long way towards making this a livable condition and increase our ability to socialize like normal people.

Educating the public will be a huge plus for us. Handing out printed material is a great idea.

Can I ask you what printed material you showed him?

Maybe we can get someone articulate like Dr. , Adah or Heidi to write a concise piece that we can hand out to people.

I have been handed material by others who are impaired in some way, usually asking for money to help, but explaining their condition and some understanding.

I have faith that the majority of people will respond in a mature manner.

If they don't. we need to either disconnect or punch them it the nose:)

Mike

To: Soundsensitivity Sent: Sunday, February 19, 2012 5:26 AMSubject: Re: Harmful intent of noise makers

This happened to me tonight. A Guy I know, was sitting with a friend. taps out of habit and I just reach over and pat him on the hand and he stops. I do this with everyone. I overheard his frfiend say "why does she keep doing that to you" I tried to explain. He started doing it on purpose. I said "No, I'm seriouse you have to stop I'm getting really upset" This made him laugh and do it more. I grabbed his hands and told him to leave. He still thought I was joking. I went in to my office and printed out the best description for Misophonia with my triggers. After he read it, he felt really bad. He promised never to tap or let anyone else tap around me. Keep a print out on you at all times:-)Sent from my Samsung Interceptâ„¢

[Guest guest]

That is great ! I can't wait. Are you writing it? To: Soundsensitivity Sent: Sunday, February 19, 2012 7:49 AM Subject: Re: Harmful intent of noise makers

There is a letter that has been composed for just this purpose. We are in the final stages of editing it and it should be ready to go up on this website very soon... We are also working on a document to present to a doctor or other health care professional who is unaware of Misophonia and all its implications...this is also almost ready. Both of these letters/documents will be available to all of you and can be edited by you to fit your own personal situation.Look for these to appear soon...I'm guessing in another couple days. Kessler>>

Donelle,> > That was a very insightful story. Most people think we are just kidding about this. They may act out of confusion or embarrassment and have no idea how much they are upsetting us. It is outside of most peoples experience and like all phobias and obsessions, does not seem rational, because it isn't. > > I envy your courage in speaking up. I need to do it more. I am the one that is always embarrassed and ashamed of my condition and hate to put people out. > > But I am really encouraged by your friend 's response. If more people understood this it would go a long way towards making this a livable condition and increase our ability to socialize like normal people. > Educating the public will be a huge plus for us. Handing out printed material is a great idea. > Can I ask you what printed material you showed him? > > Maybe we can get

someone articulate like Dr. , Adah or Heidi to write a concise piece that we can hand out to people. > I have been handed material by others who are impaired in some way, usually asking for money to help, but explaining their condition and some understanding. > I have faith that the majority of people will respond in a mature manner. > If they don't. we need to either disconnect or punch them it the nose:)> > Mike>  >  > > > ________________________________> To: Soundsensitivity > Sent: Sunday, February 19, 2012 5:26 AM> Subject: Re: Harmful intent of noise makers> > >  > This happened to me tonight. A Guy I know, was sitting with a friend. taps out of habit and I just reach over and pat him on the hand and

he stops. I do this with everyone. I overheard his frfiend say "why does she keep doing that to you" I tried to explain. He started doing it on purpose. I said "No, I'm seriouse you have to stop I'm getting really upset" This made him laugh and do it more. I grabbed his hands and told him to leave. He still thought I was joking. I went in to my office and printed out the best description for Misophonia with my triggers. After he read it, he felt really bad. He promised never to tap or let anyone else tap around me. Keep a print out on you at all times:-)> > Sent from my Samsung Interceptâ„¢>

[Guest guest]

Thanks Mike. If you use Google as your search engine it is the 4th one down.

When annoying sounds send you in to a rage. I like it because it is short and to

the point. I don't expect people to read a 3 page research paper. This is one

page. Explains fight or flight which I tried to tell him before the print out

and he said I didn't understand what that meant, I was using the term wrong and

was trying to explain fight or flight to me! It explains that we are not merley

annoyed (what he also thought). It did save me from losing a customer, he didn't

elive me, kept saying OCD. But when coming from a source quoting the NY times

definatly changed his tune.

Also, earlier this guy was tapping a pen. I asked him to stop. He also found

this funny. My water (who wasn't working,but there for a going away party) Told

him to stop and explained it beautifuly. He even told him he thought it was a

little weird until I gave him literature to read and he watches how my face and

body language changes. Sorry so long. My waiter goes to ASU he has a habit of

clicking his pen. He dosn't know he is doing it until I catch his eye and shake

my head no or I pat his hand. Well he has this class and he thought his prof was

a total bitch. He was clicking away on his pen, and then he got the look. My

look. And he saw her ruun her hands through her hair and pull it. He noticed

what he was doing. He stopped. He doesn't think she is a bitch anymore:-)

Sent from my Samsung Interceptâ„¢

[Guest guest]

Yes, the thought that other might make offensive noises to those who have 4S in an attempt to PURPOSELY bug such people and to derive some sick pleasure from watching them squirm is just... pure evil.

To: "Soundsensitivity " <Soundsensitivity > Sent: Friday, February 17, 2012 5:55 PMSubject: Re: Harmful intent of noise makers

One time my wife told a "friend" of ours about my sound sensitivity. The next time we went to their house, what does the

schmuck do but go to the refrigerator and get a big crisp apple and sit next to me and eat it in my ear.

I left and never saw him again.

Not everyone is a moron like him, but I just chose not to say anything about it.

Mike

To: Soundsensitivity Sent: Friday, February 17, 2012 3:12 PMSubject: Harmful intent of noise makers

I do feel this way also! I have always felt that the person making the noise is doing it on purpose to push my buttons and that if I asked them to stop or tried to explain my "condition" to them that they would then, in turn, do it louder or be more aggressive about it. That is why I have never said a word to anyone outside of my family about it.

[Guest guest]

That's awful! So sorry. Some people are just either unthinking or unkind sadly. I've had people (keep in mind I'm around a lot of people) try to push my buttons that way and have to say "you do it again on purpose to be funny and we are no longer friends". If they apologize we are friends. If they can't, then don't need that kind of jerk around me. Sent from my iPhone

One time my wife told a "friend" of ours about my sound sensitivity. The next time we went to their house, what does the schmuck do but go to the refrigerator and get a big crisp apple and sit next to me and eat it in my ear. I left and never saw him again. Not everyone is a moron like him, but I just chose not to say anything about it. Mike From: christyw383

To: Soundsensitivity Sent: Friday, February 17, 2012 3:12 PM Subject: Harmful intent of noise makers

I do feel this way also! I have always felt that the person making the noise is doing it on purpose to push my buttons and that if I asked them to stop or tried to explain my "condition" to them that they would then, in turn, do it louder or be more aggressive about it. That is why I have never said a word to anyone outside of my family about it.

[Guest guest]

Unless you know the character of the person that you are telling, and know them to be a true friend, I think it is best not to let on about this in most instances. I am not a very confrontational person by nature, which I think has made this condition for me more difficult to live with. I tend to suffer in silence. Mike To: "Soundsensitivity " <Soundsensitivity > Sent: Wednesday, February 22, 2012 4:38 PM Subject: Re: Harmful intent of noise makers

Yes, the thought that other might make offensive noises to those who have 4S in an attempt to PURPOSELY bug such people and to derive some sick pleasure from watching them squirm is just... pure evil.

To: "Soundsensitivity " <Soundsensitivity > Sent: Friday, February 17, 2012 5:55 PMSubject: Re: Harmful intent of noise makers

One time my wife told a "friend" of ours about my sound sensitivity. The next time we went to their house, what does the

schmuck do but go to the refrigerator and get a big crisp apple and sit next to me and eat it in my ear.

I left and never saw him again.

Not everyone is a moron like him, but I just chose not to say anything about it.

Mike

To: Soundsensitivity Sent: Friday, February 17, 2012 3:12 PMSubject: Harmful intent of noise makers

I do feel this way also! I have always felt that the person making the noise is doing it on purpose to push my buttons and that if I asked them to stop or tried to explain my "condition" to them that they would then, in turn, do it louder or be more aggressive about it. That is why I have never said a word to anyone outside of my family about it.

[Guest guest]

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike To: "Soundsensitivity " <Soundsensitivity > Sent: Wednesday, February 22, 2012 5:46 PM Subject: Re: Harmful intent of noise makers

That's awful! So sorry. Some people are just either unthinking or unkind sadly. I've had people (keep in mind I'm around a lot of people) try to push my buttons that way and have to say "you do it again on purpose to be funny and we are no longer friends". If they apologize we are friends. If they can't, then don't need that kind of jerk around me. Sent from my iPhone

One time my wife told a "friend" of ours about my sound sensitivity. The next time we went to their house, what does the schmuck do but go to the refrigerator and get a big crisp apple and sit next to me and eat it in my ear. I left and never saw him again. Not everyone is a moron like him, but I just chose not to say anything about it. Mike From: christyw383

To: Soundsensitivity Sent: Friday, February 17, 2012 3:12 PM Subject: Harmful intent of noise makers

I do feel this way also! I have always felt that the person making the noise is doing it on purpose to push my buttons and that if I asked them to stop or tried to explain my "condition" to them that they would then, in turn, do it louder or be more aggressive about it. That is why I have never said a word to anyone outside of my family about it.

[Guest guest]

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me. I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle. The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better. You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

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..

[Guest guest]

Heidi - was your appearance on the Today show recent? I've seen a clip from last year - but wondering if this is new?If so, could you email it to me? I'm keeping these type things in order to help my son should he get worse in school and I need ammunition for the school district.TY.

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me. I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle. The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better. You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

..

[Guest guest]

Heidi,Thanks so much for your in depth response. You are such an inspiration to me and I am sure anyone else that reads this and saw you on the Today show. I wish I was a little more bold and had thicker skin as you seem to have. Maybe it is a easier for women to be open about this. Us "guys" can be a little funny about admitting our weaknesses. Who's the stronger sex?? I have always been a pretty sensitive person, which probably doesn't help when you have Misophonia. Maybe assertiveness training show be added as part of a good repertoire of coping mechanisms for 4S people. I'm working on it. Everyone in my family knows I have this. My mother had it and so does my daughter, but it was the 800 pound gorilla

in the room. No one ever talked about it, but then again they didn't talk about any of the other gorillas either. I am trying to change that, and have tried to open up about it. There is still a hesitance to discuss it in detail. It would be a big relief, as it all ready has been for me. I am an outgoing and friendly person and enjoy have a a social life and it has improved over the years as I have opened up and come out of the protective shell I was in when I was younger. People are going to talk no matter what you do or say, and the good meaningful relationships are worth whatever negative you have to deal with. But it took a lot of years to get there for me. This whole Soundsensitivity group has been so helpful to me. I don't feel so alone or crazy with this problem and it has made it much easier to "come out" and be open with this problem. I hope others are becoming empowered by the support

and knowledge that this is not such a shameful thing. There is strength in numbers. I was contacted by 20/20 as well but not yet heard back from them. I think being on national television would be a tremendously liberating experience, though not without it's downside, but I am willing to deal with that. I also found a LENS practitioner here in sdale and plan to go soon. I would love to get updates on your progress and anyone else here who tries Neurofeedback. I have never given up hope that there is an answer out there. I wish you the best Heidi..Mike To: Soundsensitivity Sent: Thursday, February 23, 2012 12:21 AM Subject: Re: Harmful intent of noise makers

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the

Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me

about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me.

I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle.

The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better.

You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

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.

[Guest guest]

Sorry for the late response on this...yes, I was the main author on these two letters. They are currently being final edited by people who have more knowledge about misophonia than I do. Hopefully, they will be posted soon and somewhere easy to find on this yahoo site along with some other misophonia sites like www.misophonia.info. Stay tuned...> >> > Donelle,> > > > That was a very insightful story. Most people think we are just kidding about this. They may act out of confusion or embarrassment and have no idea how much they are upsetting us. It is outside of most peoples experience and like all phobias and obsessions, does not seem rational, because it isn't. > > > > I envy your courage in speaking up. I need to do it more. I am the one that is always embarrassed and ashamed of my condition and hate to put people out. > > > > But I am really encouraged by your friend 's response. If more people understood this it would go a long way towards making this a livable condition and increase our ability to socialize like normal people. > > Educating the public will be a huge plus for us. Handing out printed material is a great idea. > > Can I ask you what printed material you showed him? > > > > Maybe we can get someone articulate like Dr. , Adah or Heidi to write a concise piece that we can hand out to people. > > I have been handed material by others who are impaired in some way, usually asking for money to help, but explaining their condition and some understanding. > > I have faith that the majority of people will respond in a mature manner. > > If they don't. we need to either disconnect or punch them it the nose:)> > > > Mike> >  > >  > > > > > > ________________________________> > From: "iellemv@" iellemv@> > To: Soundsensitivity > > Sent: Sunday, February 19, 2012 5:26 AM> > Subject: Re: Harmful intent of noise makers> > > > > >  > > This happened to me tonight. A Guy I know, was sitting with a friend. taps out of habit and I just reach over and pat him on the hand and he stops. I do this with everyone. I overheard his frfiend say "why does she keep doing that to you" I tried to explain. He started doing it on purpose. I said "No, I'm seriouse you have to stop I'm getting really upset" This made him laugh and do it more. I grabbed his hands and told him to leave. He still thought I was joking. I went in to my office and printed out the best description for Misophonia with my triggers. After he read it, he felt really bad. He promised never to tap or let anyone else tap around me. Keep a print out on you at all times:-)> > > > Sent from my Samsung Intercept™> >>

[Guest guest]

It was September 8, 2011:http://today.msnbc.msn.com/id/44438402/ns/today-today_health/t/when-annoying-sounds-spark-major-rage/Just after the NY Times article came out on the 5th:http://www.nytimes.com/2011/09/06/health/06annoy.htmlJust got an email from the 20/20 producer, they are still gearing up for an air date on Misophonia, very exciting, another opportunity to reach more people and generate more medical interest. HeidiSent from my iPhone

Heidi - was your appearance on the Today show recent? I've seen a clip from last year - but wondering if this is new?If so, could you email it to me? I'm keeping these type things in order to help my son should he get worse in school and I need ammunition for the school district.TY.

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me. I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle. The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better. You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

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..

[Guest guest]

I'm proud of you, Mike. As a highly sensitive person I truly understand. And yes I think assertiveness training for everyone is a great idea. :-). I too came from a family that didn't talk about the " gorillas" Boy have I spent my whole life breaking down those barriers, starting at 10 when I suggested to my super strict grandfather that he was capable of getting up and retrieving the butter himself. Lol I think it would be phenomenal if you appeared on 20/20. It would be very liberating for you and it helps to know you have the strength of the 1000's of people here who by our communality of Misophonia are family. :-)I wish every person here relief. We are going to get it!HeidiSent from my iPhone

Heidi,Thanks so much for your in depth response. You are such an inspiration to me and I am sure anyone else that reads this and saw you on the Today show. I wish I was a little more bold and had thicker skin as you seem to have. Maybe it is a easier for women to be open about this. Us "guys" can be a little funny about admitting our weaknesses. Who's the stronger sex?? I have always been a pretty sensitive person, which probably doesn't help when you have Misophonia. Maybe assertiveness training show be added as part of a good repertoire of coping mechanisms for 4S people. I'm working on it. Everyone in my family knows I have this. My mother had it and so does my daughter, but it was the 800 pound gorilla

in the room. No one ever talked about it, but then again they didn't talk about any of the other gorillas either. I am trying to change that, and have tried to open up about it. There is still a hesitance to discuss it in detail. It would be a big relief, as it all ready has been for me. I am an outgoing and friendly person and enjoy have a a social life and it has improved over the years as I have opened up and come out of the protective shell I was in when I was younger. People are going to talk no matter what you do or say, and the good meaningful relationships are worth whatever negative you have to deal with. But it took a lot of years to get there for me. This whole Soundsensitivity group has been so helpful to me. I don't feel so alone or crazy with this problem and it has made it much easier to "come out" and be open with this problem. I hope others are becoming empowered by the support

and knowledge that this is not such a shameful thing. There is strength in numbers. I was contacted by 20/20 as well but not yet heard back from them. I think being on national television would be a tremendously liberating experience, though not without it's downside, but I am willing to deal with that. I also found a LENS practitioner here in sdale and plan to go soon. I would love to get updates on your progress and anyone else here who tries Neurofeedback. I have never given up hope that there is an answer out there. I wish you the best Heidi..Mike To: Soundsensitivity Sent: Thursday, February 23, 2012 12:21 AM Subject: Re: Harmful intent of noise makers

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the

Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me

about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me.

I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle.

The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better.

You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

.

[Guest guest]

Heidi,Thanks for your encouragement. The support group effect here is great regardless of anything else we can accomplish. I just heard from 20/20 this morning too, and will be going to New York for an interview later in March. Maybe we will meet sometime. I feel very hopeful for the future of Misophonia suffers. Anything I can do so others don't have to live the life I had to live will be worth it. It gives me a great sense of purpose, as I know it has you too. Mike To: "Soundsensitivity " <Soundsensitivity > Sent: Thursday, February 23, 2012 10:14 AM Subject: Re: Harmful intent of noise makers

I'm proud of you, Mike. As a highly sensitive person I truly understand. And yes I think assertiveness training for everyone is a great idea. :-). I too came from a family that didn't talk about the " gorillas" Boy have I spent my whole life breaking down those barriers, starting at 10 when I suggested to my super strict grandfather that he was capable of getting up and retrieving the butter himself. Lol I think it would be phenomenal if you appeared on 20/20. It would be very liberating for you and it helps to know you have the strength of the 1000's of people here who by our communality of Misophonia are family. :-)I wish every person here relief. We are going to get it!HeidiSent from my iPhone

Heidi,Thanks so much for your in depth response. You are such an inspiration to me and I am sure anyone else that reads this and saw you on the Today show. I wish I was a little more bold and had thicker skin as you seem to have. Maybe it is a easier for women to be open about this. Us "guys" can be a little funny about admitting our weaknesses. Who's the stronger sex?? I have always been a pretty sensitive person, which probably doesn't help when you have Misophonia. Maybe assertiveness training show be added as part of a good repertoire of coping mechanisms for 4S people. I'm working on it. Everyone in my family knows I have this. My mother had it and so does my

daughter, but it was the 800 pound gorilla

in the room. No one ever talked about it, but then again they didn't talk about any of the other gorillas either. I am trying to change that, and have tried to open up about it. There is still a hesitance to discuss it in detail. It would be a big relief, as it all ready has been for me. I am an outgoing and friendly person and enjoy have a a social life and it has improved over the years as I have opened up and come out of the protective shell I was in when I was younger. People are going to talk no matter what you do or say, and the good meaningful relationships are worth whatever negative you have to deal with. But it took a lot of years to get there for me. This whole Soundsensitivity group has been so helpful to me. I don't feel so alone or crazy with this problem and it has made it much easier to "come out" and be open with this problem. I hope others are becoming empowered by the support

and knowledge that this is not such a shameful thing. There is strength in numbers. I was contacted by 20/20 as well but not yet heard back from them. I think being on national television would be a tremendously liberating experience, though not without it's downside, but I am willing to deal with that. I also found a LENS practitioner here in sdale and plan to go soon. I would love to get updates on your progress and anyone else here who tries Neurofeedback. I have never given up hope that there is an answer out there. I wish you the best Heidi..Mike To: Soundsensitivity Sent: Thursday, February 23, 2012 12:21 AM Subject: Re: Harmful intent of noise makers

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the

Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me

about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me.

I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle.

The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better.

You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

.

[Guest guest]

just wanted to say right on mike.good man...

It's sad by true.

I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...

I hope it would never backfire in any way. Coming out about this does change things I am sure.

Mike

PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.Thank you. MJ

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..

[Guest guest]

That's really awesome of you to do that- it will help so many of us to just get the word out- thanks so muchAudrey To: "Soundsensitivity " <Soundsensitivity > Sent: Thursday, February 23, 2012 12:50 PM Subject: Re: Harmful intent of noise makers

Heidi,Thanks for your encouragement. The support group effect here is great regardless of anything else we can accomplish. I just heard from 20/20 this morning too, and will be going to New York for an interview later in March. Maybe we will meet sometime. I feel very hopeful for the future of Misophonia suffers. Anything I can do so others don't have to live the life I had to live will be worth it. It gives me a great sense of purpose, as I know it has you too. Mike To: "Soundsensitivity " <Soundsensitivity > Sent: Thursday, February 23, 2012 10:14 AM Subject: Re: Harmful intent of noise makers

I'm proud of you, Mike. As a highly sensitive person I truly understand. And yes I think assertiveness training for everyone is a great idea. :-). I too came from a family that didn't talk about the " gorillas" Boy have I spent my whole life breaking down those barriers, starting at 10 when I suggested to my super strict grandfather that he was capable of getting up and retrieving the butter himself. Lol I think it would be phenomenal if you appeared on 20/20. It would be very liberating for you and it helps to know you have the strength of the 1000's of people here who by our communality of Misophonia are family. :-)I wish every person here relief. We are going to get it!HeidiSent from my iPhone

Heidi,Thanks so much for your in depth response. You are such an inspiration to me and I am sure anyone else that reads this and saw you on the Today show. I wish I was a little more bold and had thicker skin as you seem to have. Maybe it is a easier for women to be open about this. Us "guys" can be a little funny about admitting our weaknesses. Who's the stronger sex?? I have always been a pretty sensitive person, which probably doesn't help when you have Misophonia. Maybe assertiveness training show be added as part of a good repertoire of coping mechanisms for 4S people. I'm working on it. Everyone in my family knows I have this. My mother had it and so does my

daughter, but it was the 800 pound gorilla

in the room. No one ever talked about it, but then again they didn't talk about any of the other gorillas either. I am trying to change that, and have tried to open up about it. There is still a hesitance to discuss it in detail. It would be a big relief, as it all ready has been for me. I am an outgoing and friendly person and enjoy have a a social life and it has improved over the years as I have opened up and come out of the protective shell I was in when I was younger. People are going to talk no matter what you do or say, and the good meaningful relationships are worth whatever negative you have to deal with. But it took a lot of years to get there for me. This whole Soundsensitivity group has been so helpful to me. I don't feel so alone or crazy with this problem and it has made it much easier to "come out" and be open with this problem. I hope others are becoming empowered by the support

and knowledge that this is not such a shameful thing. There is strength in numbers. I was contacted by 20/20 as well but not yet heard back from them. I think being on national television would be a tremendously liberating experience, though not without it's downside, but I am willing to deal with that. I also found a LENS practitioner here in sdale and plan to go soon. I would love to get updates on your progress and anyone else here who tries Neurofeedback. I have never given up hope that there is an answer out there. I wish you the best Heidi..Mike To: Soundsensitivity Sent: Thursday, February 23, 2012 12:21 AM Subject: Re: Harmful intent of noise makers

Mike,I would do the Today again no matter what as it reached out to sooo many people and I got to connect with people like Bernadette and her daughter and so many others because of it and in my opinion the show helped with the road to research. But I can say without a doubt you have to be okay with confrontation and have a thick skin to announce Misophonia on national TV because with good comes bad, and yea, everyone knows what drives you crazy, but so far no one outside of my boss has used it to hurt me, and with him it was only to hurt my feelings, and frankly, it didn't work, I just lost what little respect for him I had left. But I do think everyone can tell those people in situations where it will help your life, you just have to think through your responses, reactions and ultimate goal of doing so.At our big monthly meeting at my work, my boss told all 75 of my fellow attorneys at the

Department of Justice that I would be on the Today show the next day and they should all watch me confess a "problem" of mine. This was after I told him to keep it under his hat, I figured maybe some would see but no need to advertise. Turns out after the show he and my direct supervisor made fun of my "crazy" calling me "psycho" and my Misophonia my "psychosis" and laughing at my expense. Fortunately, at the the end of last year, they both retired. As I got on the plane coming home from NY on the day of the show, the flight attendant said, "I saw you on the Today show this morning. Kinda crazy" and seriously looked me up and down like I was crazy, not in a hey-it's-a-small world-isn't-that-crazy kind of way.After the show one co-worker told me she also had Misophonia and another woman told a fellow co-worker she has it. Not a single other person at work has said anything to me

about it even thought I know they all know, kinda strange. Three of my friends have come forward to tell me they have and about 10 students worldwide contacted me to say they have it. Interestingly, all women. None of them knew about it before the Today show and they all thought they were alone … like all of us here at one point in time.Within the swing dance community, lots of people watched and I heard people were talking about it but very few to my face, some of it quite negatively. But it didn't phase me, I simply don't care. One lady walked up to me at a dance and said, "So I saw you on TV, that's pretty weird, you must have a hard time in life." And walked away, and it wasn't a positive feeling interaction. About six months ago, one woman told a guy that I was just starting to spend time with to find the clip of the Today show on the internet to watch me and not chew gum around me.

I know she did it to be nice, but it really was my news to tell him, not hers. He kept it a secret for months and then when I told him about my Misophonia, he told me he had seen it and that's why he didn't chew gum, which was nice. I have always asked my friends to not chew gum around me, and it's a rule in my dance class that no one is aloud to chew gum and all have complied so no big change there (except in class now the gum speech is met with lots of knowing glances and a few "watch it or she'll knock your teeth out" jokes, which is very funny, because everyone knows I'm not a violent person at all. One guy I used to date called to say "oh, my god, I'm so sorry, all those times I'd pick you up and you'd ask me to spit out my gum, I'm so sorry I made you do that." LOL, that was sweet … but he was near impossible to date because gum was a part of his lifestyle.

The only people I'd be around eating in a quiet environment who saw the show, is my family, and all but one has changed their eating habits but it's because they don't know the things they bother me, they don't know how to change. The one exception is my brother, bless him, he has tried to close his mouth more -- he has suffered from allergies his whole life and has to mouth breath which means he eats with his mouth slightly open to breathe. But he was on the receiving end of my wrath growing up more than any one else and knew exactly what I didn't like about his eating so his effort makes sense, and I tell him how much I appreciate it. He even told me that since we were kids and all my gum complaining has made him a keenly aware adult about how and when people chew gum.Bottom line, I am a strong advocate for speaking up and telling people that can help make your life better.

You don't need to do it to help others, just to help you, help your life be better. But I recognize that you have to be prepared to be met with a mixture of reactions and think through who you are going to response to those reactions. It's definitely complicated but I do think telling people is empowering and overall has many many more benefits than not.Heidi

It's sad by true. I was curious Heidi, if you have had people see your television appearance and commented on it to you. And has it had an effect in the way they act around you now that they know you have this problem? Maybe more considerate and quiet when they eat or chew gum...I hope it would never backfire in any way. Coming out about this does change things I am sure.Mike PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE.

ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.

Thank you. MJ

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