Re: OCD Seems to be the illness that know one understands (ofcourse except for us)

[Guest guest]

So true . We had a therapist for our son that told us we basically caused

his OCD (obsessive type) because we had taught him right from wrong. He said

our parenting style created it and that children will absorb our values through

life experience and we shouldn't be telling them and imposing them upon our

children. My 3rd child also has OCD and was parented much differently than our

1st child. It's not caused by our parenting. So sad that too many parents

accept this abuse from ignorant people. I guess we just keep educating and

advocating.

Becky from N.D.

>

> I am constantly surprised at how unaware or misguided - otherwise seemingly

educated people are about OCD !

[Guest guest]

Yes, but it is kind of a catch 22 because if  no one talks about it, other

remain uneducated and in a misunderstood state.  Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles.  I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable.  What do other people think?

To:

Sent: Saturday, April 28, 2012 11:54 AM

Subject: OCD Seems to be the illness that know one understands

(ofcourse except for us)

 

I am constantly surprised at how unaware or misguided - otherwise seemingly

educated people are about OCD ! Part of the reason it seems to be so isolating

is that its so misunderstood...If your kid had diabetes, everyone would

immediately undertand (no judgement!) If you say my kid has OCD - God only know

what response you would receive....so I keep it pretty quiet....suffering amony

ourselves...

Don't know if that will really ever change....

[Guest guest]

I don't feel comfortable making it public about my kids' struggles given the

ignorance about mental illness out there. No matter how much they are told

otherwise, people tend to look down on those with mental illnesses and tend to

blame it for things that have nothing to do with it. This still happens to me.

I have OCD. I was disappointed in something a sibling did and told her about it

yesterday, and rather than apologizing, the sibling said, " That's your OCD! "

The thing is my OCD is about contamination fears; it has NOTHING to do with my

disappointment that neither she nor her grown children who are all in from out

of town for our uncle's funeral offered to go in my car with me as I drove alone

the hour's distance from the funeral home to the cemetery and then back again to

our dad's home. They just aren't very warm or thoughtful and it disappointed

me. Yet, rather than saying, she's sorry and would have done it differently, it

was easier to say, " That's your OCD. " When you let others know about having

OCD, it is easy for them to start blaming anything on it that they disagree with

you about. I don't want this to happen to my kids.

OCD Seems to be the illness that know one understands

(ofcourse except for us)

I am constantly surprised at how unaware or misguided - otherwise seemingly

educated people are about OCD ! Part of the reason it seems to be so isolating

is that its so misunderstood...If your kid had diabetes, everyone would

immediately undertand (no judgement!) If you say my kid has OCD - God only know

what response you would receive....so I keep it pretty quiet....suffering amony

ourselves...

Don't know if that will really ever change....

[Guest guest]

Hmm... I see both sides. In the beginning stages I did feel very isolated, and

was not comfortable talking about it. I resented the fact that if my child was

undergoing cancer treatment I would be open about it and get support from

others. Every day was so hard, but I could not share that with anyone, until I

found this group

Now, six years later, I selectively educate, when the opportunity arises. The

selective part is about my son's right to privacy. Since I hold a local support

group, and am actively involved I am rather vocal, and walk a fine line. It is

difficult.

I also have my own needs, which involve talking about living with a child with

OCD, and actively advocating for changes to mental health services. So, that

means I blow my kids privacy needs to some extent, if I am going to meet my own

needs. I know some parents do not share much, or even come to our support

group, because of the need for privacy.

So then the question is why the need for privacy? Some of it is about the

stigma around mental health. Why is there stigma? Generally it is about fear

of the unknown, often misinformation. For the person with the disorder there

are often feelings of shame, that somehow they are less than, or weak, for not

being able to just get over this, and not feeling able to adequately explain how

crippling OCD can be.

But if this is to ever change we have to find a way to talk about it. I like to

use the words, " brain-based disorder " . It directs the attention to the physical

part of the body that is " broken " . Somehow this seems to have less stigma,

maybe because it's more concrete.

Then I will be asked if there is a name for this disorder. Depending who it is,

and on my energy level to explain fully, I will refer to it as an anxiety

disorder, or OCD, or both in that order. I get a feel for the person's level of

interest and real concern, and that helps me decide too. I'm not going to bare

my soul to everyone I meet, but do seem to find opportunities to talk about

mental health all the time, and it often morphs into talking about anxiety

disorders/OCD.

We have a program that has teens with mental health challenges go into schools

and talk about living with whatever disorder they have. It really helps to shed

the stigma and normalize MH. Of course there are always the few who ridicule,

but the majority are very interested and supportive and many who want to talk

about their own concerns and issues around MH. So, talking about it in a

prepared way can really work.

My son is not a talker. He has no shame around having OCD and will talk about

it, but has no particular need to talk about it. I expect that is because he is

living it everyday and would rather get away from it whenever he can What he

does find hard, is when people ask him what he's doing. He is just finishing

high school at age 20, due to lost years with OCD, and it is an open question

what he will be able to do after that. So, for him, it's not the OCD as much as

the loss of " normal " or typical life of a 20yr old, and how to talk about what

his life is now.

I found it helpful to think about why I WOULD talk about it, or why I WOULDN'T

talk about it. I needed to talk about it to get out of the isolation. I was

hesitant to talk about it because I didn't want to be judged as a parent, or for

my child to be looked at differently. Now it is just our life, for better or

worse, and I care less about what others might think. Think a good chunk of

that comes from feeling like we've been through the ringer, and proud to have

come out the other end. So, what do we have to be ashamed of? If others judge

or are uncomfortable with it, that's their problem.

As mentioned by the previous poster, I do find as I have become more comfortable

with our situation I feel more comfortable talking about it. I have found my

WAY to talk about it, when, and with whom. I have said here before, that I

learned early on to forgive people before they even opened their mouths. Often

unhelpful things are said, often when they are trying to be helpful, especially

family. Takes too much energy to try and explain something that truly can only

be understood if you are living it, easier to just let it go, I find.

So, you do have to be up for the responses you will get, and that's hard when

you are in the thick of it, it's just too " raw " . Same as learning to manage the

OCD, it takes time to find your language for speaking about it. My experience

of it anyway.

Barb

Canada

Son, 20, OCD, LD Plus

>

> Yes, but it is kind of a catch 22 because if  no one talks about it, other

remain uneducated and in a misunderstood state.  Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles.  I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable.  What do other people think?

>

>

[Guest guest]

Hmm... I see both sides. In the beginning stages I did feel very isolated, and

was not comfortable talking about it. I resented the fact that if my child was

undergoing cancer treatment I would be open about it and get support from

others. Every day was so hard, but I could not share that with anyone, until I

found this group

Now, six years later, I selectively educate, when the opportunity arises. The

selective part is about my son's right to privacy. Since I hold a local support

group, and am actively involved I am rather vocal, and walk a fine line. It is

difficult.

I also have my own needs, which involve talking about living with a child with

OCD, and actively advocating for changes to mental health services. So, that

means I blow my kids privacy needs to some extent, if I am going to meet my own

needs. I know some parents do not share much, or even come to our support

group, because of the need for privacy.

So then the question is why the need for privacy? Some of it is about the

stigma around mental health. Why is there stigma? Generally it is about fear

of the unknown, often misinformation. For the person with the disorder there

are often feelings of shame, that somehow they are less than, or weak, for not

being able to just get over this, and not feeling able to adequately explain how

crippling OCD can be.

But if this is to ever change we have to find a way to talk about it. I like to

use the words, " brain-based disorder " . It directs the attention to the physical

part of the body that is " broken " . Somehow this seems to have less stigma,

maybe because it's more concrete.

Then I will be asked if there is a name for this disorder. Depending who it is,

and on my energy level to explain fully, I will refer to it as an anxiety

disorder, or OCD, or both in that order. I get a feel for the person's level of

interest and real concern, and that helps me decide too. I'm not going to bare

my soul to everyone I meet, but do seem to find opportunities to talk about

mental health all the time, and it often morphs into talking about anxiety

disorders/OCD.

We have a program that has teens with mental health challenges go into schools

and talk about living with whatever disorder they have. It really helps to shed

the stigma and normalize MH. Of course there are always the few who ridicule,

but the majority are very interested and supportive and many who want to talk

about their own concerns and issues around MH. So, talking about it in a

prepared way can really work.

My son is not a talker. He has no shame around having OCD and will talk about

it, but has no particular need to talk about it. I expect that is because he is

living it everyday and would rather get away from it whenever he can What he

does find hard, is when people ask him what he's doing. He is just finishing

high school at age 20, due to lost years with OCD, and it is an open question

what he will be able to do after that. So, for him, it's not the OCD as much as

the loss of " normal " or typical life of a 20yr old, and how to talk about what

his life is now.

I found it helpful to think about why I WOULD talk about it, or why I WOULDN'T

talk about it. I needed to talk about it to get out of the isolation. I was

hesitant to talk about it because I didn't want to be judged as a parent, or for

my child to be looked at differently. Now it is just our life, for better or

worse, and I care less about what others might think. Think a good chunk of

that comes from feeling like we've been through the ringer, and proud to have

come out the other end. So, what do we have to be ashamed of? If others judge

or are uncomfortable with it, that's their problem.

As mentioned by the previous poster, I do find as I have become more comfortable

with our situation I feel more comfortable talking about it. I have found my

WAY to talk about it, when, and with whom. I have said here before, that I

learned early on to forgive people before they even opened their mouths. Often

unhelpful things are said, often when they are trying to be helpful, especially

family. Takes too much energy to try and explain something that truly can only

be understood if you are living it, easier to just let it go, I find.

So, you do have to be up for the responses you will get, and that's hard when

you are in the thick of it, it's just too " raw " . Same as learning to manage the

OCD, it takes time to find your language for speaking about it. My experience

of it anyway.

Barb

Canada

Son, 20, OCD, LD Plus

>

> Yes, but it is kind of a catch 22 because if  no one talks about it, other

remain uneducated and in a misunderstood state.  Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles.  I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable.  What do other people think?

>

>

[Guest guest]

Hmm... I see both sides. In the beginning stages I did feel very isolated, and

was not comfortable talking about it. I resented the fact that if my child was

undergoing cancer treatment I would be open about it and get support from

others. Every day was so hard, but I could not share that with anyone, until I

found this group

Now, six years later, I selectively educate, when the opportunity arises. The

selective part is about my son's right to privacy. Since I hold a local support

group, and am actively involved I am rather vocal, and walk a fine line. It is

difficult.

I also have my own needs, which involve talking about living with a child with

OCD, and actively advocating for changes to mental health services. So, that

means I blow my kids privacy needs to some extent, if I am going to meet my own

needs. I know some parents do not share much, or even come to our support

group, because of the need for privacy.

So then the question is why the need for privacy? Some of it is about the

stigma around mental health. Why is there stigma? Generally it is about fear

of the unknown, often misinformation. For the person with the disorder there

are often feelings of shame, that somehow they are less than, or weak, for not

being able to just get over this, and not feeling able to adequately explain how

crippling OCD can be.

But if this is to ever change we have to find a way to talk about it. I like to

use the words, " brain-based disorder " . It directs the attention to the physical

part of the body that is " broken " . Somehow this seems to have less stigma,

maybe because it's more concrete.

Then I will be asked if there is a name for this disorder. Depending who it is,

and on my energy level to explain fully, I will refer to it as an anxiety

disorder, or OCD, or both in that order. I get a feel for the person's level of

interest and real concern, and that helps me decide too. I'm not going to bare

my soul to everyone I meet, but do seem to find opportunities to talk about

mental health all the time, and it often morphs into talking about anxiety

disorders/OCD.

We have a program that has teens with mental health challenges go into schools

and talk about living with whatever disorder they have. It really helps to shed

the stigma and normalize MH. Of course there are always the few who ridicule,

but the majority are very interested and supportive and many who want to talk

about their own concerns and issues around MH. So, talking about it in a

prepared way can really work.

My son is not a talker. He has no shame around having OCD and will talk about

it, but has no particular need to talk about it. I expect that is because he is

living it everyday and would rather get away from it whenever he can What he

does find hard, is when people ask him what he's doing. He is just finishing

high school at age 20, due to lost years with OCD, and it is an open question

what he will be able to do after that. So, for him, it's not the OCD as much as

the loss of " normal " or typical life of a 20yr old, and how to talk about what

his life is now.

I found it helpful to think about why I WOULD talk about it, or why I WOULDN'T

talk about it. I needed to talk about it to get out of the isolation. I was

hesitant to talk about it because I didn't want to be judged as a parent, or for

my child to be looked at differently. Now it is just our life, for better or

worse, and I care less about what others might think. Think a good chunk of

that comes from feeling like we've been through the ringer, and proud to have

come out the other end. So, what do we have to be ashamed of? If others judge

or are uncomfortable with it, that's their problem.

As mentioned by the previous poster, I do find as I have become more comfortable

with our situation I feel more comfortable talking about it. I have found my

WAY to talk about it, when, and with whom. I have said here before, that I

learned early on to forgive people before they even opened their mouths. Often

unhelpful things are said, often when they are trying to be helpful, especially

family. Takes too much energy to try and explain something that truly can only

be understood if you are living it, easier to just let it go, I find.

So, you do have to be up for the responses you will get, and that's hard when

you are in the thick of it, it's just too " raw " . Same as learning to manage the

OCD, it takes time to find your language for speaking about it. My experience

of it anyway.

Barb

Canada

Son, 20, OCD, LD Plus

>

> Yes, but it is kind of a catch 22 because if  no one talks about it, other

remain uneducated and in a misunderstood state.  Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles.  I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable.  What do other people think?

>

>

[Guest guest]

My children, 12 year old twins, both have OCD, and I have OCD, and all of us

have felt that resentment that if we had diabetes or a physical disability

people would be understanding and wouldn't think we are " less than " or " strange "

because of it. I know that people judge parents with kids with mental illness,

and I hate worrying what my kids' school administrators/teachers might think of

me when I admit both my kids have OCD. On the other hand, because all three of

us have OCD (I am a single mom.), we support each other and let each other know

that we are brave for the struggles that we cope with in secret.

Re: OCD Seems to be the illness that know one

understands (ofcourse except for us)

Hmm... I see both sides. In the beginning stages I did feel very isolated, and

was not comfortable talking about it. I resented the fact that if my child was

undergoing cancer treatment I would be open about it and get support from

others. Every day was so hard, but I could not share that with anyone, until I

found this group

Now, six years later, I selectively educate, when the opportunity arises. The

selective part is about my son's right to privacy. Since I hold a local support

group, and am actively involved I am rather vocal, and walk a fine line. It is

difficult.

I also have my own needs, which involve talking about living with a child with

OCD, and actively advocating for changes to mental health services. So, that

means I blow my kids privacy needs to some extent, if I am going to meet my own

needs. I know some parents do not share much, or even come to our support

group, because of the need for privacy.

So then the question is why the need for privacy? Some of it is about the

stigma around mental health. Why is there stigma? Generally it is about fear

of the unknown, often misinformation. For the person with the disorder there

are often feelings of shame, that somehow they are less than, or weak, for not

being able to just get over this, and not feeling able to adequately explain how

crippling OCD can be.

But if this is to ever change we have to find a way to talk about it. I like to

use the words, " brain-based disorder " . It directs the attention to the physical

part of the body that is " broken " . Somehow this seems to have less stigma,

maybe because it's more concrete.

Then I will be asked if there is a name for this disorder. Depending who it is,

and on my energy level to explain fully, I will refer to it as an anxiety

disorder, or OCD, or both in that order. I get a feel for the person's level of

interest and real concern, and that helps me decide too. I'm not going to bare

my soul to everyone I meet, but do seem to find opportunities to talk about

mental health all the time, and it often morphs into talking about anxiety

disorders/OCD.

We have a program that has teens with mental health challenges go into schools

and talk about living with whatever disorder they have. It really helps to shed

the stigma and normalize MH. Of course there are always the few who ridicule,

but the majority are very interested and supportive and many who want to talk

about their own concerns and issues around MH. So, talking about it in a

prepared way can really work.

My son is not a talker. He has no shame around having OCD and will talk about

it, but has no particular need to talk about it. I expect that is because he is

living it everyday and would rather get away from it whenever he can What he

does find hard, is when people ask him what he's doing. He is just finishing

high school at age 20, due to lost years with OCD, and it is an open question

what he will be able to do after that. So, for him, it's not the OCD as much as

the loss of " normal " or typical life of a 20yr old, and how to talk about what

his life is now.

I found it helpful to think about why I WOULD talk about it, or why I WOULDN'T

talk about it. I needed to talk about it to get out of the isolation. I was

hesitant to talk about it because I didn't want to be judged as a parent, or for

my child to be looked at differently. Now it is just our life, for better or

worse, and I care less about what others might think. Think a good chunk of

that comes from feeling like we've been through the ringer, and proud to have

come out the other end. So, what do we have to be ashamed of? If others judge

or are uncomfortable with it, that's their problem.

As mentioned by the previous poster, I do find as I have become more comfortable

with our situation I feel more comfortable talking about it. I have found my

WAY to talk about it, when, and with whom. I have said here before, that I

learned early on to forgive people before they even opened their mouths. Often

unhelpful things are said, often when they are trying to be helpful, especially

family. Takes too much energy to try and explain something that truly can only

be understood if you are living it, easier to just let it go, I find.

So, you do have to be up for the responses you will get, and that's hard when

you are in the thick of it, it's just too " raw " . Same as learning to manage the

OCD, it takes time to find your language for speaking about it. My experience

of it anyway.

Barb

Canada

Son, 20, OCD, LD Plus

>

> Yes, but it is kind of a catch 22 because if no one talks about it, other

remain uneducated and in a misunderstood state. Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles. I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable. What do other people think?

>

>

[Guest guest]

My children, 12 year old twins, both have OCD, and I have OCD, and all of us

have felt that resentment that if we had diabetes or a physical disability

people would be understanding and wouldn't think we are " less than " or " strange "

because of it. I know that people judge parents with kids with mental illness,

and I hate worrying what my kids' school administrators/teachers might think of

me when I admit both my kids have OCD. On the other hand, because all three of

us have OCD (I am a single mom.), we support each other and let each other know

that we are brave for the struggles that we cope with in secret.

Re: OCD Seems to be the illness that know one

understands (ofcourse except for us)

Hmm... I see both sides. In the beginning stages I did feel very isolated, and

was not comfortable talking about it. I resented the fact that if my child was

undergoing cancer treatment I would be open about it and get support from

others. Every day was so hard, but I could not share that with anyone, until I

found this group

Now, six years later, I selectively educate, when the opportunity arises. The

selective part is about my son's right to privacy. Since I hold a local support

group, and am actively involved I am rather vocal, and walk a fine line. It is

difficult.

I also have my own needs, which involve talking about living with a child with

OCD, and actively advocating for changes to mental health services. So, that

means I blow my kids privacy needs to some extent, if I am going to meet my own

needs. I know some parents do not share much, or even come to our support

group, because of the need for privacy.

So then the question is why the need for privacy? Some of it is about the

stigma around mental health. Why is there stigma? Generally it is about fear

of the unknown, often misinformation. For the person with the disorder there

are often feelings of shame, that somehow they are less than, or weak, for not

being able to just get over this, and not feeling able to adequately explain how

crippling OCD can be.

But if this is to ever change we have to find a way to talk about it. I like to

use the words, " brain-based disorder " . It directs the attention to the physical

part of the body that is " broken " . Somehow this seems to have less stigma,

maybe because it's more concrete.

Then I will be asked if there is a name for this disorder. Depending who it is,

and on my energy level to explain fully, I will refer to it as an anxiety

disorder, or OCD, or both in that order. I get a feel for the person's level of

interest and real concern, and that helps me decide too. I'm not going to bare

my soul to everyone I meet, but do seem to find opportunities to talk about

mental health all the time, and it often morphs into talking about anxiety

disorders/OCD.

We have a program that has teens with mental health challenges go into schools

and talk about living with whatever disorder they have. It really helps to shed

the stigma and normalize MH. Of course there are always the few who ridicule,

but the majority are very interested and supportive and many who want to talk

about their own concerns and issues around MH. So, talking about it in a

prepared way can really work.

My son is not a talker. He has no shame around having OCD and will talk about

it, but has no particular need to talk about it. I expect that is because he is

living it everyday and would rather get away from it whenever he can What he

does find hard, is when people ask him what he's doing. He is just finishing

high school at age 20, due to lost years with OCD, and it is an open question

what he will be able to do after that. So, for him, it's not the OCD as much as

the loss of " normal " or typical life of a 20yr old, and how to talk about what

his life is now.

I found it helpful to think about why I WOULD talk about it, or why I WOULDN'T

talk about it. I needed to talk about it to get out of the isolation. I was

hesitant to talk about it because I didn't want to be judged as a parent, or for

my child to be looked at differently. Now it is just our life, for better or

worse, and I care less about what others might think. Think a good chunk of

that comes from feeling like we've been through the ringer, and proud to have

come out the other end. So, what do we have to be ashamed of? If others judge

or are uncomfortable with it, that's their problem.

As mentioned by the previous poster, I do find as I have become more comfortable

with our situation I feel more comfortable talking about it. I have found my

WAY to talk about it, when, and with whom. I have said here before, that I

learned early on to forgive people before they even opened their mouths. Often

unhelpful things are said, often when they are trying to be helpful, especially

family. Takes too much energy to try and explain something that truly can only

be understood if you are living it, easier to just let it go, I find.

So, you do have to be up for the responses you will get, and that's hard when

you are in the thick of it, it's just too " raw " . Same as learning to manage the

OCD, it takes time to find your language for speaking about it. My experience

of it anyway.

Barb

Canada

Son, 20, OCD, LD Plus

>

> Yes, but it is kind of a catch 22 because if no one talks about it, other

remain uneducated and in a misunderstood state. Yet, of course, no one wants

their child to be alienated, talked about, etc -- especially when they are going

through such difficult struggles. I think the thing to do is to become an

advocate and a spokesperson for ocd when you have gotten to the point where your

child is very stable. What do other people think?

>

>