Re: How to tell people about misophonia.

[Guest guest]

I experienced the asme thing and regret telling anyone. I'm not going to tell

anyone else. I emailed my mom about it and she didn't even respond.

>

> Since finding out about it last week I've only told a few people about it. I

would like to tell other family/friends since some of them do things to trigger

it e every time I see them, but I don't want to be made fun of by them. My

husband already started making fun of me for it and it really bugs me. Any good

tips on sharing?

>

[Guest guest]

This is an important issue and kind of new now that we are coming out the closet with this. How we respond to people after they find out that we have this problem is important to discuss. In that past I kept things pretty much to myself for fear of ridicule, teasing, and people deliberatelytrying to trigger me. I have had all responses. My opinion is that we need to be straight, firm, honest and consistent in our responses. It will be very personaland depends on ones personality and relationship with the offenders. I think we should discuss this more.Mike To: Soundsensitivity Sent: Thursday, May 24, 2012 6:45 AM Subject: Re: How to tell people about misophonia.

I experienced the asme thing and regret telling anyone. I'm not going to tell anyone else. I emailed my mom about it and she didn't even respond.

>

> Since finding out about it last week I've only told a few people about it. I would like to tell other family/friends since some of them do things to trigger it e every time I see them, but I don't want to be made fun of by them. My husband already started making fun of me for it and it really bugs me. Any good tips on sharing?

>

[Guest guest]

I'm one of those people who suffered for 30-odd years, feeling crazy and

neurotic, intolerant and alone. I'm lucky, to a degree - I don't have the rage

that some of you feel. I have the fight-or-flight response, and feel myself

getting more and more tense, building to the point when my nerves are just shot

- and I have to get away.

After I learned about Misophonia, it was so exciting! I ran right home to tell

my sweetie. After lamenting sadly that he'd have to stop teasing me now that

something was actually " wrong with me, " he tried his best to support me. He was

the easy part, though we still have occasional challenges.

I'd love to know how people tell their co-workers. Do you wait until you have

been " officially " diagnosed? I live on an island off the coast of Maine, and

can't imagine that there's anyone near here who even knows about Misophonia. I

plan to call audiologists in my area (and even down in Southern Maine) to try

and find someone who can help. Does anyone else live in northern New England?

Any suggestions?

That said - I haven't figured out how to approach my work colleagues, and

certainly not my boss, without having a diagnosis to back me up. I share an

office with a very sweet woman who snacks ALL DAY LONG - no exaggeration. Maybe

this would be okay if she were a quiet eater, but she's the opposite. She snacks

constantly, and always has coffee, an open bottle of seltzer and/or tea on her

desk at all times. She even drinks so noisily that she makes taking a sip of

coffee or water sound like she's eating a meal. She makes more mouth noises than

anyone I have ever met! I don't spend an extra minute in her company because my

nerves are so frayed in her presence. I feel pretty bad about that sometimes,

because she must wonder why I'm not very friendly. I wear headphones all day

long, listening to a combination of brown or pink noise and music. This helps -

but not always. I want to approach my boss to suggest an office change, but I'm

worried that she won't think this is a big enough deal to warrant the upheaval

of changing offices.

I want to talk with my office-mate directly, but I'm not sure how. She knows I

" hate " the sound of people eating, but she seems to think that only happens when

she eats something crunchy, and so she unhelpfully warns me when she's about to

eat an apple. I feel like I have an opening because of the 20/20 episode - so

we'll see.

This group is so helpful... I'd appreciate your words of wisdom! Thanks so

much.

[Guest guest]

There is a team of people that wrote letters to help explain it to doctors,

family, etc etc. the link is here on this site and on the others sites.

>

>

>

>

> I'm one of those people who suffered for 30-odd years, feeling crazy and

neurotic, intolerant and alone. I'm lucky, to a degree - I don't have the rage

that some of you feel. I have the fight-or-flight response, and feel myself

getting more and more tense, building to the point when my nerves are just shot

- and I have to get away.

>

> After I learned about Misophonia, it was so exciting! I ran right home to tell

my sweetie. After lamenting sadly that he'd have to stop teasing me now that

something was actually " wrong with me, " he tried his best to support me. He was

the easy part, though we still have occasional challenges.

>

> I'd love to know how people tell their co-workers. Do you wait until you have

been " officially " diagnosed? I live on an island off the coast of Maine, and

can't imagine that there's anyone near here who even knows about Misophonia. I

plan to call audiologists in my area (and even down in Southern Maine) to try

and find someone who can help. Does anyone else live in northern New England?

Any suggestions?

>

> That said - I haven't figured out how to approach my work colleagues, and

certainly not my boss, without having a diagnosis to back me up. I share an

office with a very sweet woman who snacks ALL DAY LONG - no exaggeration. Maybe

this would be okay if she were a quiet eater, but she's the opposite. She snacks

constantly, and always has coffee, an open bottle of seltzer and/or tea on her

desk at all times. She even drinks so noisily that she makes taking a sip of

coffee or water sound like she's eating a meal. She makes more mouth noises than

anyone I have ever met! I don't spend an extra minute in her company because my

nerves are so frayed in her presence. I feel pretty bad about that sometimes,

because she must wonder why I'm not very friendly. I wear headphones all day

long, listening to a combination of brown or pink noise and music. This helps -

but not always. I want to approach my boss to suggest an office change, but I'm

worried that she won't think this is a big enough deal to warrant the upheaval

of changing offices.

>

> I want to talk with my office-mate directly, but I'm not sure how. She knows

I " hate " the sound of people eating, but she seems to think that only happens

when she eats something crunchy, and so she unhelpfully warns me when she's

about to eat an apple. I feel like I have an opening because of the 20/20

episode - so we'll see.

>

> This group is so helpful... I'd appreciate your words of wisdom! Thanks so

much.

>

[Guest guest]

Jen,

Maybe you could approach your boss about an office change by telling her that

you'll be more productive without the constant distraction. Ask your boss what

irritates her and ask her if she could work around that all day. It seems people

are more understanding if you can get them to relate to your experience.

If that doesn't work and you get really desperate, I wonder how the word

" disability " would affect the situation. Employers tend to be more accommodating

for disabilities (or it could backfire on you). I would use the term Sensory

Disorder, not Misophonia because to my knowledge there is no Medical(DSM) code

or diagnostic testing to back you up if she inquires.

As for an official diagnosis, try getting tested by a Neuropyschologist. There

is a DSM code for Sensory Integration Dysfunction. I truly believe Misophonia is

related to that.

I speak from experience, although my testing and diagnosis was done by

Occupational Therapy Specialists who are rare.

I feel apprehensive in admitting that at the age of 57 I applied for disability

because my 50-year old condition had deteriorated so badly, I could no longer

function in the workplace. Because I'd had so much therapy and the paperwork to

back it up, Sensory Processing Disorder was found (in my case) to be a

justifiable disability.

Jen, you need to get out of that situation. I wish you the best.

Colleen

>

>

>

>

> I'm one of those people who suffered for 30-odd years, feeling crazy and

neurotic, intolerant and alone. I'm lucky, to a degree - I don't have the rage

that some of you feel. I have the fight-or-flight response, and feel myself

getting more and more tense, building to the point when my nerves are just shot

- and I have to get away.

>

> After I learned about Misophonia, it was so exciting! I ran right home to tell

my sweetie. After lamenting sadly that he'd have to stop teasing me now that

something was actually " wrong with me, " he tried his best to support me. He was

the easy part, though we still have occasional challenges.

>

> I'd love to know how people tell their co-workers. Do you wait until you have

been " officially " diagnosed? I live on an island off the coast of Maine, and

can't imagine that there's anyone near here who even knows about Misophonia. I

plan to call audiologists in my area (and even down in Southern Maine) to try

and find someone who can help. Does anyone else live in northern New England?

Any suggestions?

>

> That said - I haven't figured out how to approach my work colleagues, and

certainly not my boss, without having a diagnosis to back me up. I share an

office with a very sweet woman who snacks ALL DAY LONG - no exaggeration. Maybe

this would be okay if she were a quiet eater, but she's the opposite. She snacks

constantly, and always has coffee, an open bottle of seltzer and/or tea on her

desk at all times. She even drinks so noisily that she makes taking a sip of

coffee or water sound like she's eating a meal. She makes more mouth noises than

anyone I have ever met! I don't spend an extra minute in her company because my

nerves are so frayed in her presence. I feel pretty bad about that sometimes,

because she must wonder why I'm not very friendly. I wear headphones all day

long, listening to a combination of brown or pink noise and music. This helps -

but not always. I want to approach my boss to suggest an office change, but I'm

worried that she won't think this is a big enough deal to warrant the upheaval

of changing offices.

>

> I want to talk with my office-mate directly, but I'm not sure how. She knows

I " hate " the sound of people eating, but she seems to think that only happens

when she eats something crunchy, and so she unhelpfully warns me when she's

about to eat an apple. I feel like I have an opening because of the 20/20

episode - so we'll see.

>

> This group is so helpful... I'd appreciate your words of wisdom! Thanks so

much.

>

[Guest guest]

I've heard of misophonia being described as a " sound allergy " . If you think

about it, that's what it is. Just like seasonal allergies or food allergies or

medical allergies are our body's overreaction to something that is not supposed

to harm us (via the senses of taste or smell or touch), so too misophonia is an

overreaction to sounds that are not supposed to harm us (via the sense of

hearing). If you think telling might help, I'd start with someone who has an

allergy so you can compare the two. Someone purposefully triggering your 4S is

like you purposefully sneaking peanutbutter into someone's dessert to watch them

break out in hives. It's stupid, but sadly with some immature people,

unavoidable. Nonetheless, if you were allergic to peanuts, wouldn't you want to

tell people who are preparing your meal?

> >

> > Since finding out about it last week I've only told a few people about it. I

would like to tell other family/friends since some of them do things to trigger

it e every time I see them, but I don't want to be made fun of by them. My

husband already started making fun of me for it and it really bugs me. Any good

tips on sharing?

> >

>

[Guest guest]

I understand using allergies as an analogy to help people understand Miso

because both are, as you say, " overreactions " .

However, I don't mean to be contrary, but to say that Miso IS an allergy is

incorrect. Simply stated, allergies are an immune system malfunction/failure for

which there are remedies. Miso (and any other types of sensory disorders) is

neurological for which no meaningful remedy has been found. The only remedy the

two have in common is avoidance.

I apologize in advance if I've misunderstood you or if you can direct me to a

website that scientifically demonstrates Miso to be a sound allergy. The sites I

found that were titled " Sound Allergy " eventually admitted it was hyperacusis

which is ear damage.

Again, this is not a criticism or scolding. This is informational only.

> > >

> > > Since finding out about it last week I've only told a few people about it.

I would like to tell other family/friends since some of them do things to

trigger it e every time I see them, but I don't want to be made fun of by them.

My husband already started making fun of me for it and it really bugs me. Any

good tips on sharing?

> > >

> >

>

[Guest guest]

Hi, I'm new to the group having just learned about misophonia from a friend who has it, and saw the 20/20 show. When my friend described the symptoms to me, I immediately knew I had it too. I didn't understand Karolina to mean that misophonia really is an allergy, but that she was simply using an analogy to help other people understand the hyper response to normal sounds. It's a very helpful analogy, but we do need to be clear that it's not an actual allergy. I've already used the allergy analogy to explain it to my sister, but also told her that the cause is most likely neurological.

Missy in Nashville, TN

I understand using allergies as an analogy to help people understand Miso because both are, as you say, "overreactions".However, I don't mean to be contrary, but to say that Miso IS an allergy is incorrect. Simply stated, allergies are an immune system malfunction/failure for which there are remedies. Miso (and any other types of sensory disorders) is neurological for which no meaningful remedy has been found. The only remedy the two have in common is avoidance.I apologize in advance if I've misunderstood you or if you can direct me to a website that scientifically demonstrates Miso to be a sound allergy. The sites I found that were titled "Sound Allergy" eventually admitted it was hyperacusis which is ear damage.

[Guest guest]

I have only told immediate family and friends, those who see my daughter often.  Being that her main trigger's are birds and ticking clocks...it is bound to be very obvious to anyone, should she eventualy be away from me all day that something is wrong, and I don't want ppl to think she is crazy.

 

She had a bit of a breakdown during final exams in May.  I didn't know there was a ticking clock in the room, and she's just been bearing up with it the whole year.  But when the teacher added the stress of " we all really need to do good on these tests as it is important for the school " she felt added pressure.

 

During the silence of the testing she couldn't take it, and was almost hyperventilating.  She told the teacher " the clock was too loud. "

 

Thank God I sent her to a private Christian school this year, because that teacher was very calming to her, and let her leave the classroom until she calmed down and removed the clock.

 

I told my daughter that I would need to begin telling ppl in a 'careful' way so they understood it wasn't home famiy problems causing this.  I told the teacher that I believed she had misophonia, and did not have her evaluated due to the fact that many doctors are not aware of this (including our family friend of internal medicine who too thought this was hyperacusis or something else, but had no understanding of misophonia. 

 

I've since sent our friend doctor the links to 20/20, and the teacher and aksed to keep it in confidence from children (as they can b cruel).

 

Others I have not told.  I am careful who I tell because of cynical ppl who don't really care and would just demean my daughter. 

 

Even her grandparents (almost 80) are skeptical and think she does this for attention. 

 

I've told them that I am around her all the time, and what they see is a fraction of her life.  It is real.  It is heartbreaking.  And it is to be approached with compassion or not at all.

 

So...I choose, and give those I choose to tell, the links.  Others, I tell my daughter to just say " i'm not feeling well, and I need to get away. "

 

M

Hi, I'm new to the group having just learned about misophonia from a friend who has it, and saw the 20/20 show.  When my friend described the symptoms to me, I immediately knew I had it too.  I didn't understand Karolina to mean that misophonia really is an allergy, but that she was simply using an analogy to help other people understand the hyper response to normal sounds.  It's a very helpful analogy, but we do need to be clear that it's not an actual allergy.  I've already used the allergy analogy to explain it to my sister, but also told her that the cause is most likely neurological.

 

Missy in Nashville, TN

 

I understand using allergies as an analogy to help people understand Miso because both are, as you say, " overreactions " .

However, I don't mean to be contrary, but to say that Miso IS an allergy is incorrect. Simply stated, allergies are an immune system malfunction/failure for which there are remedies. Miso (and any other types of sensory disorders) is neurological for which no meaningful remedy has been found. The only remedy the two have in common is avoidance.

I apologize in advance if I've misunderstood you or if you can direct me to a website that scientifically demonstrates Miso to be a sound allergy. The sites I found that were titled " Sound Allergy " eventually admitted it was hyperacusis which is ear damage.