Re: Revealing OCD to others

[Guest guest]

I would follow your daughter's lead on this. If she is comfortable

revealing it, her attitude will influence the way others respond. If you want

her to

feel that having OCD is no different than having asthma, then you'll have to

behave as if you believe that (even if you have to pretend!). My 11 year old

has been telling everyone for a few years and has never had an uncomfortable

moment with it. I'm sure her friends tell their parents, and those parents have

never mentioned it to me, but I attribute that to our generation's feelings of

shame about anything " mental " .

I think 12 years old is enough to decide how she wants to deal with it.

You could warn her that she may be setting herself up for some teasing at some

point, but I bet she knows that already. When my daughter was 9 she told a

couple of her close friends, but not the two she played with the most. She

explained to me that those friends were the type who might get mad at her and

tell

other people just to hurt her. The people she chose to tell were not likely to

use it against her. Her judgement was surprisingly sound. These days she is

comfortable telling the whole class about it and doesn't care what others think.

Her attitude is " everyone has something " .

Best wishes,

in NV

[Guest guest]

I know exactly what you are going through. I'm sure opinions on this matter

will differ. I certainly don't feel comfortable with everyone knowing. Even a

close friend of mine doesn't know, and that's because her son and my son compete

a lot, and I feel it might be used against him. I, too, just shared it with the

teacher a few days ago. She was very receptive about it, very caring. However,

the school counselor last year talked to my son because he was having some

separation anxiety-we had built a home and moved twice in a short time span.

She came to me later and said that my son felt like I hadn't been spending much

time with him because of the move, etc. Although I was with my son every

evening, we were tied up with moving, building a house, etc., but it was

stressful on him with his anxiety/OCD. Anyway, she was looking for a problem at

home-looking for a fault, for someone to blame. At least, I felt that's what

was going on, and so, there's always that fear of being judged. It's a

difficult balance to achieve-encouraging your child that it is nothing to be

ashamed of, yet also telling him that he shouldn't just tell everyone. What

message does that ultimately give? I always tell my son that not everyone

understands about it, so it's best not to tell everyone. I'm not sure I handle

it " correctly " . It's just what I feel comfortable with. It's wonderful your

daughter feels comfortable enough with telling someone. Perhaps when we've

become " veteran OCD parents " , we'll become more comfortable disclosing it.

Perhaps it's like the ERP therapy in that, we should play it around in our minds

with the thought, " What if people know!? " Maybe we should desensitize ourselves

to the idea of what people might think so that we can break these kids out of

their jails of silence. I dunno-let me know if you get a divine answer or

something on how to handle it.

in Southern IL

Revealing OCD to others

My 12 year old has started to share her OCD DX with others. While I

am glad she is " comfortable " with her diagnosis, I am wondering about

putting limits on who she shares this with for fear others will

misunderstand. Also, I feel that I should let the parent(s) of those

she tells know about it too. Her first " confidant " was someone who

questioned her frequent handwashing. After she told me about having

shared the OCD diagnosis, I called the girl's mom to tell her about

it. I thought it only fair in case her daughter was worried or

overly concerned, and to ask that she tell her daughter this was a

confidential matter that my daughter shared with her and not to tell

others. On a slightly amusing note, the mother said " Oh, now it

makes sense that (my daughter) said she wanted to give up hand

washing for lent! " Anyway, I don't want her to be ashamed of her OCD

diagnosis/issues any more than she would be ashemed of her asthma but

other people are not so understanding...especially 12 year olds. Any

suggestions?

P.S. We are still relatively new to this. She was diagnosed in

January and is taking Zoloft. E/RP therapy will " oficially " start

April 6. I only recently told her teacher, again because of my fear

she would misunderstand (she didn't, she was great and planned to

research it a bit).

Our list archives, bookmarks, files, and chat feature may be accessed at:

http://health.groups.yahoo.com/group// .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D., Aureen Pinto

Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, Kathy , Vivian Stembridge, and Jackie Stout. Subscription

issues or suggestions may be addressed to Louis Harkins, list owner, at

louisharkins@... , louisharkins@... , louisharkins@...

..

------------------------------------------------------------------------------

[Guest guest]

I'm not sure it's possible to place any effective limits on who your

daughter tells about her OCD. How could you enforce or police this? What

consequences could there be if she told someone who fell outside your limit?

I think she might just continue to tell those she chooses, but next time

perhaps not discuss it with you. If she has symptoms that are noticeable to

others (i.e. the handwashing) this situation is likely to keep coming up,

and I think she handled it well. When your daughter's friend asked about

her handwashing, her choices were to tell the truth or come up with some

false explanation on the spur of the moment. Lies often sound like lies

(even those told for the best of reasons) and evasiveness can signal to

friends that your daughter had something shameful to hide. Your daughter at

12 is edging into the teen years, a time when what friends think counts so

much more, and what Mom and Dad think counts for less than it once did...

I understand your concerns, and your daughter may well at some point tell

someone who misunderstands or maybe uses the information about her OCD to

try to hurt her. We all have these types of unpleasant experiences, they

help us learn judgment. I have tried to discuss the idea of " private " or

personal information with my child but still, she tells others that *I*

would not consider as deserving of private information! Such as the girl in

her classroom who is her best friend one week and sworn enemy the next. :-)

But I understand her view that it's difficult and weird to have a big secret

from your best buds, which adds pressure to her trying not to show symptoms

around others--which only raises anxiety and makes it harder. She finds it

easier to just say, for ex. that was a tic, it's kind of like a sneeze, it

will go away soon. As a practical point, my daughter says she usually can't

remember what (lie) she's told to who, so as with any deception, she gets

hung by the details!

I think all the " misunderstanding " about OCD and other brain disorders comes

from keeping it secret and treating it as something shameful. What if the

world *did* know our kids were bright, sensitive, wonderful children who as

an aside, happen to have an anxiety disorder? I think if we want our

children to realize and believe this truth about themselves, we have to work

on " bossing back " our own feelings of shame or embarrassment about brain

disorders.

Just MHO, take care,

Kathy R. in Indiana

----- Original Message -----

> My 12 year old has started to share her OCD DX with others. While I

> am glad she is " comfortable " with her diagnosis, I am wondering about

> putting limits on who she shares this with for fear others will

> misunderstand. Also, I feel that I should let the parent(s) of those

> she tells know about it too. Her first " confidant " was someone who

> questioned her frequent handwashing. After she told me about having

> shared the OCD diagnosis, I called the girl's mom to tell her about

> it. I thought it only fair in case her daughter was worried or

> overly concerned, and to ask that she tell her daughter this was a

> confidential matter that my daughter shared with her and not to tell

> others. On a slightly amusing note, the mother said " Oh, now it

> makes sense that (my daughter) said she wanted to give up hand

> washing for lent! " Anyway, I don't want her to be ashamed of her OCD

> diagnosis/issues any more than she would be ashemed of her asthma but

> other people are not so understanding...especially 12 year olds. Any

> suggestions?

>

> P.S. We are still relatively new to this. She was diagnosed in

> January and is taking Zoloft. E/RP therapy will " oficially " start

> April 6. I only recently told her teacher, again because of my fear

> she would misunderstand (she didn't, she was great and planned to

> research it a bit).

[Guest guest]

I often wonder about telling people about the OCD too. I recently told my

youngest daughter to not tell a certain girl at school because I know that this

little girl is very fickle and might hate tomorrow. understood.

The subject came up when the girl asked why she was holding her hand

away from her body-- felt that her shirt was contaminated and didn't want

it

to touch any part of her own body. told her it was a private matter

and this started a war that lasted several days. I pointed out to that

this was a good indication that the girl should not be told. I myself have told

many adults at school because 's behavior was pretty bizarre for awhile.

I have found everyone to be supportive and understanding. My older daughter

has told several of her friends and they have been very good about it all.

She does have one good friend she hasn't told because she " wants someone to

think I'm normal. " Sigh. The things these kids have to go through! Kelley in

NV

[Guest guest]

>

> I think all the " misunderstanding " about OCD and other brain

> disorders comes

> from keeping it secret and treating it as something shameful.  What

> if the

> world *did* know our kids were bright, sensitive, wonderful children

> who as

> an aside, happen to have an anxiety disorder?  I think if we want our

> children to realize and believe this truth about themselves, we have

> to work

> on " bossing back " our own feelings of shame or embarrassment about

> brain

> disorders.

>

>

Oh Kathy, How eloquently said. This is exactly how I feel.

People who are going to make fun of, and tease, my child will do so

whether or not they know about his OCD, tics, and CAPD. Even if they

had no symptoms to pick on, they would say that his ears were too big,

or his eyes to small. If none of that worked, they would say he was too

smart or that he had the dreaded " cooties. " That's how teasing works.

His OCD, his tics, his CAPD, his giftedness, his sense of humor....

these things are all a part of who he is. They are no different than

his eye color or his hair color (or how incredibly handsome he is). He

has no control of them (in the sense that he didn't ask for them, or

decide to have them). Why should he be ashamed?

The people who need to be ashamed are those who make conscious choices

to be mean to others. They have control over what they do.

My very simplified response to teasing that I teach my students goes

like this: Is what the other person said true?

If it isn't, then just ignore it. It doesn't make a difference.

If it is, then you need to decide if it is something that you don't

like about yourself. If it's not, then just ignore it, it doesn't make

a difference.

If it's something you don't like, then you need to decide if it is

something you can change. If it's not, then ignore the teasing, and

work on liking yourself the way you are.

If it is something that you don't like about yourself, that you can

change, then the person who is teasing you has done you a favor by

motivating you to change. Start changing!

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

[Guest guest]

Kelley,

It is such a difficult thing, I agree. I always try to explain this to my son

like this: There are some things we just don't go announce to people. It's ok

to have private things that aren't necessarily something to be ashamed of, but

something that we consider private. We as adults realize that we don't discuss

certain things, like sex, religion, politics with certain people because we

don't want a debate, and we don't want to discuss our own private matters. I

think this is where the misunderstanding is-not that it's something to be

ashamed of, but that it's private and not an easy turmoil to deal with or

discuss....and obviously still not understood by many.

Mental illness is in reality no different than a physical illness...it's just

the brain that's sick, but it is sick. There are obviously even some physical

illnesses we don't discuss because they're " private " . I truly don't believe

there is a right answer to all of this. Obviously highly regarded mental health

advocates want everyone to disclose for the sociological aspects and progress we

want to make in increasing awareness. That I can appreciate. However, is it

necessarily good for my child? Who will ever truly know?! I have never told my

son he cannot tell people...I have only suggested that he be careful. He has

chosen to tell a relative whose reaction I wasn't sure would be positive, but it

went fine. I suppose as he grows up and matures, he'll be more independent in

making the decisions about sharing this. As for right now, with his being a 9

year-old who is just developing social skills, I suppose I'll continue to be

cautious to a degree, and like I said before, possibly I'll continue to do my

own desensitization therapy with each step I take in accepting and sharing the

OCD. It's early for me to be so comfortable with it. I suppose had I been

dealing with this for years, I might not even flinch discussing it. I can only

remember how I felt when my son told ME what he was thinking. Of course, the

type of OCD is also an issue as hand-washing or counting might seem not quite as

" wacky " to some as thoughts about cutting up your mother or being afraid you're

gay as my son has had. The thoughts themselves I probably will never be able to

tell anyone....my own sisters don't even know, because it would horrify

them......anyway, this sure has provided lots of food for thought!!!!

Take care,

in So IL

Re: Revealing OCD to others

I often wonder about telling people about the OCD too. I recently told my

youngest daughter to not tell a certain girl at school because I know that

this

little girl is very fickle and might hate tomorrow. understood.

The subject came up when the girl asked why she was holding her hand

away from her body-- felt that her shirt was contaminated and didn't want

it

to touch any part of her own body. told her it was a private matter

and this started a war that lasted several days. I pointed out to that

this was a good indication that the girl should not be told. I myself have

told

many adults at school because 's behavior was pretty bizarre for awhile.

I have found everyone to be supportive and understanding. My older daughter

has told several of her friends and they have been very good about it all.

She does have one good friend she hasn't told because she " wants someone to

think I'm normal. " Sigh. The things these kids have to go through! Kelley

in

NV

[Guest guest]

Kelley

First off, I would like to let you know that I am very new at this.

My son was just dx'd less than a month ago.

Secondly, I think it's great that your daughter is so comfortable

with it. A zit is a big deal at your daughter's age!!! Most kids

her age are intimidated by his or her peers, I think it's wonderful

that she is able to be open with people and not ashamed. Kudos to

her!!!

When my son was diagnosed with OCD with Autistic tendencies, I

immediately told his teacher. He goes to a preschool with children

with Learning Delays. He was initially enrolled as a " typical " . He

is basically there to be a " peer model " for the other children.

Because she is all to familiar with dealing with children with

similar conditions, she has been more than helpful. I also called

the elementary school where Brayden will be attending this fall and

spoke with the pricipal. She too was extremely helpful. She has

invited us to come 'wander' the halls of the school for the entire 2

weeks before school starts, to familiarize him with the environment.

He doesn't adjust well to change. We will gradually work our way

into the classroom, meet the teacher, etc.

I've also had to inform some of Brayden's friends' parent's.

Fortunately, he doesn't suffer the anti-social behavior typical with

Autism at this time, so I am doing everything in my power to keep

him... social. He plays tee-ball and he goes to friends' houses to

play. I feel that if the parents know, then they can avoid a

meltdown by not triggering one unintentionally. He has done well and

it hasn't 'scared' any of the other parents, so I think my judgment

has been pretty good thus far. In fact, they have been more than

willing to help. Brayden has a problem wearing anything but blue

jeans, so we set up a playdate with a friend where they were wearing

matching sweatsuits. It worked out beautifully (after 3 tries!!) and

he wears sweats everytime they play together.

To sum it up... The more informed people are, the more likely they

are to help and the less likely they are to judge. They may judge if

they do not know why she does certain things. If someone doesn't

like your child, they are going to poke fun anyways.

Good luck to you and your family

(HUGS)

Joannie

> My 12 year old has started to share her OCD DX with others. While

I

> am glad she is " comfortable " with her diagnosis, I am wondering

about

> putting limits on who she shares this with for fear others will

> misunderstand. Also, I feel that I should let the parent(s) of

those

> she tells know about it too. Her first " confidant " was someone who

> questioned her frequent handwashing. After she told me about

having

> shared the OCD diagnosis, I called the girl's mom to tell her about

> it. I thought it only fair in case her daughter was worried or

> overly concerned, and to ask that she tell her daughter this was a

> confidential matter that my daughter shared with her and not to

tell

> others. On a slightly amusing note, the mother said " Oh, now it

> makes sense that (my daughter) said she wanted to give up hand

> washing for lent! " Anyway, I don't want her to be ashamed of her

OCD

> diagnosis/issues any more than she would be ashemed of her asthma

but

> other people are not so understanding...especially 12 year olds.

Any

> suggestions?

>

> P.S. We are still relatively new to this. She was diagnosed in

> January and is taking Zoloft. E/RP therapy will " oficially " start

> April 6. I only recently told her teacher, again because of my

fear

> she would misunderstand (she didn't, she was great and planned to

> research it a bit).

[Guest guest]

Thanks for the feedback and suggestions. Lots to think about. I

guess part of my concern about revealing the OCD is not so much the

compulsion part,(which for her is the hand washing and avoidance

behavior) it's the obsessions. I'd feel OK about my daughter telling

some people she is obsessed about germs/contamination. Her morbid

thoughts are a whole different story and like , there are some

(ok, most) family members that I have not told the details/specifics

of her obsessions. I am sure her peers would flip if she said she

had thoughts/images about stabbing and/or strangling certain

people...Again, I appreciate the feedback and continue to find great

relief and support through this venue.

Laurie K

[Guest guest]

Hi Kathy,

You didn't misunderstand my first post. I was worried about the OCD

relevation...Responses such as yours helped me clarify in my own mind

why I was nervous about her " telling " people. It's likely she won't

get into the details about the morbid thoughts with her friends

because she has really only told me and her psychiatrist. She hasn't

mentioned them to her dad or other close family members. I'll keep

my fingers crossed that it stays that way (at least for now!)

You story about your daughters conversations in the grocery line

reminded me of my own daughters response to people who ask her if she

has any brothers or sisters. She will smile and say " I probably have

a brother! " She is from China and is probably right, but the look on

peoples faces when she says that with complete sincerity is

priceless!

Thanks again,

Laurie K.

--

- In , " Kathy " <kathylr@a...>

wrote:

> Hi Laurie, reading this post, I may have misunderstood your first

one. I

> thought you worried about your daughter letting others know about

her

> diagnosis of OCD. Instead you are concerned she may tell the

details of her

> obsessions to others?

>

> My daughter was about to turn five when she had her onset, so she

was not

> particularly socially astute at the time, or now either really at

10. For a

> long time after diagnosis she'd tell anyone at all she had OCD,

including

> the mail carrier and whoever was standing behind us in the checkout

at

> Wal-Mart. It seemed I was forever holding impromptu public-ed

sessions

> about OCD when these folks would smile a puzzled smile at my

daughter and

> then look at me to clarify.

>

> Her obsessions are also of the gruesome, " knife-killing-death "

type. In the

> years since her diagnosis, I don't think she's even thought to tell

anyone

> about the specifics. She's disgusted and embarrassed by them so

perhaps

> that's why. I know she's mentioned worries about Mom dying that

she can't

> get out of her head to others, and told friends about OCD when

they " caught "

> her doing a compulsion, or ticcing, or crying (when triggered by a

film,

> say, at school). Mostly she's been pretty frustrated in telling

friends

> about OCD because they typically don't " get " it and respond that

they have

> those worries too, or special things they do to help themselves

feel better

> when they are scared. I have had a few of her friends corner me to

verify

> that Kel does indeed have a brain disorder, so I know she's told

some that.

>

> I guess that's a long way around to saying the situation you are

envisioning

> has never come up for us--yet, but I know your child is a couple of

years

> older than mine. By now I don't remember exactly what I told

family, I

> think I did tell my sisters the content of her obsessions but

others such as

> grandparents I just said they were gruesome or scary without the

details.

>

> FWIW,

> Kathy R. in Indiana

>

> ----- Original Message -----

> From: " morningsun92 " <scout8142004@m...>

>

> > Thanks for the feedback and suggestions. Lots to think about. I

> > guess part of my concern about revealing the OCD is not so much

the

> > compulsion part,(which for her is the hand washing and avoidance

> > behavior) it's the obsessions. I'd feel OK about my daughter

telling

> > some people she is obsessed about germs/contamination. Her morbid

> > thoughts are a whole different story and like , there are some

> > (ok, most) family members that I have not told the

details/specifics

> > of her obsessions. I am sure her peers would flip if she said she

> > had thoughts/images about stabbing and/or strangling certain

> > people...Again, I appreciate the feedback and continue to find

great

> > relief and support through this venue.

> >

> > Laurie K