Re: Re: NAMI letter-from WTO Group Member

[Guest guest]

Ariel,

Thanks for your insightful comments and I agree with

everything you said.

One Non-BP Recovering Man

--- whitedkcats2 wrote:

> Yes, and she did a wonderful job of taking the

> pulse of those on

> these boards and condensing many of the issues that

> need to be

> addressed into a letter to NAMI. I work in the

> mental health field

> and know many professionals whose education in the

> realm of

> personality disorders is very textboook. Many have

> been warned off

> working with these clients as patients (due to the

> difficulties

> we're all too well aware of), and those who do focus

> thier efforts

> on those with the illness themselves. The effects on

> family members

> often aren't addressed until that person requires

> therapy or

> psychiatric treatment themselves.

>

> I think is correct that the statistical data

> from the point

> of view of the boards is very different than what is

> portrayed in

> most psychiatric literature. One obstacle I see to

> correcting this,

> is that most studies are based on those already

> diagnosed and they

> are done in a very controlled environment for the

> validity of the

> study. So many high-functioning people with BPD, or

> those with

> codependents to help them hide it, aren't diagnosed.

> To have studies

> based on those ill enough to have been diagnosed and

> brought into

> treatment, as the rule of thumb for criteria to

> identify those with

> the disorder, is disturbing. However, the nature of

> mental illness,

> the stigma surrounding it, and the reluctance of

> family members to

> speak out( along with HIPPA Laws of confidentiality)

> make it very

> difficult for there to be studies of BPD in an

> external review, so I

> don't beleive an accurate picture of the illnes as

> inter-relational

> dystfunction is portrayed correctly. In a nutshell

> the professionals

> also need to see what we see, and hear what we're

> saying, in order

> to determine the citeria and best treatment for BPD

> and those

> involved.

>

> I showed this letter to a few friends, who are

> collegues

> (psychiatrists, psuchologist, and social workers),

> and they are now

> interested in reading more. I asked them to consider

> that many of

> their clients who aren't BP may never the less come

> from a FOO with

> one and how valuable it would be to have a better

> understanding of

> dysfunction in general within the family unit. I

> think the fact that

> these illness go unrecognised has undermined the

> belief that they

> exist to the extent thay do and the amount of damage

> that is done is

> minimized. It's too bad there couldn't be a study

> done based on

> what we've been through.

>

> Thanks again !

>

> Ariel

>

>

> > > >

> > > > I am sharing a NAMI response from one of our

> WTO

> > > groups list

> > > member:

> > > >

> > > >

> > > > Dear all?

> > > >

> > > >

> > > >

> > > > Have you written to NAMI yet? We all have

> until

> > > Sunday.

> > > >

> > > >

> > > >

> > > > I thought I would share with you some excerpts

> > > from what I wrote.

> > > > Also--please do not send to me; send to this

> > > email: But if you

> > > would like

> > > > to send me a copy, that would be great.

> > > >

> > > >

> > > >

> > > > Also, you do not have to give them your name,

> etc.

> > > If you don't

> > > even want

> > > > your email showing, you can send it to me and

> I

> > > can send.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > The following issues represent the " in vivo "

> > > concerns of family

> > > members

> > > > whose loved ones refuse therapy because they

> > > believe that all the

> > > blame

> > > > lies with others, and whose impulsive

> aggression

> > > (see studies by

> > > Larry

> > > > Siever, MD) is directed outward towards their

> > > family members

> > > rather than

> > > > inward.

> > > >

> > > >

> > > >

> > > > Borderline Disorder Prevention

> > > >

> > > >

> > > >

> > > > Studies confirm that children of a parent with

> BPD

> > > are five times

> > > more

> > > > likely to develop BPD themselves. While we

> don't

> > > know exactly why

> > > that is

> > > > so-biological or environmental factors-swift

> > > action must be taken

> > > to

> > > > address both to attempt to halt the legacy of

> BPD

> > > that is passed

> > > from

> > > > generation. Research by Hoffman et al

> has

> > > demonstrated that

> > > adult

> > > > family members experience burden, depression,

> > > loss, grief, and

> > > other signs

> > > > of extreme distress. It is inconceivable that

> > > vulnerable children

> > > would

> > > > not also be affected.

> > > >

> > > >

> > > >

> > > > We also have a multitude of studies showing

> the

> > > negative effects on

> > > > children of those with BPD traits and

> associated

> > > comorbid

> > > disorders: rage,

> > > > substance abuse, depression, inconsistency,

> and so

> > > forth. Of

> > > course, many

> > > > parents with BPD are very good parents, as

> well

> > > (see the book Get

> > > Me Out

> > > > of Here by Reiland, which is on its way

> to

> > > you).

> > > >

> > > >

> > > >

> > > > To counter this, it is advisable to teach the

> > > appropriate

> > > consumers how to

> > > > be a more effective parent even when they are

> > > overwhelmed by their

> > > own

> > > > emotional needs. The best candidates are those

> who

> > > are concerned

> > > > themselves about the possible effects of the

> > > disorder on their

> > > children.

> > > > (I know of such a program just for parents

> with

> > > BPD).

> > > >

> > > >

> > > >

> > > > We must also make the other parent aware of

> this

> > > issue

> > > (grandparents are

> > > > already concerned while the other parent is

> often

> > > in denial) and

> > > recommend

> > > > ways of ameliorating this situation. This is

> the

> > > most direct and

> > > powerful

> > > > way to change the environment. We also need to

> > > listen to the

> > > concerns of

> > > > those relatives trying to intervene personally

> or

> > > through the

> > > courts.

> > > >

> > > >

> > > >

> > > > I understand that this is a very sensitive

> issue.

> > > Consumers already

> > > > experience a lot of shame. But this can be

> done in

> > > a helpful,

> > > rather than

> > > > a confrontive way. Learning these skills can

> also

> > > help the

> > > consumer feel

> > > > better about themselves.

> > > >

> > > >

> > > >

> > > > Address the Invisible " Non-Consumers "

> > > >

> > > >

> > > >

> > > > For many people, the stereotypical image of a

> > > consumer with BPD is

> > > that of

> > > > someone who is suicidal and self-injures. For

> most

> > > professionals,

> > > it

> > > > defines the disorder. However, if my community

> > > members are any

> > > sign, these

> > > > two behaviors are much, much less common than

> > > assumed. Suicide and

> > > > self-harm are uncommon discussion topics,

> > > especially among

> > > partners whose

> > > > loved one has every other classic sign of BPD

> > > (although it is more

> > > common

> > > > for parents).

> > > >

> > > >

> > > >

> > > > Without these classic signs, the borderline

> loved

> > > ones of these

> > > family

> > > > members see no reason to go to therapy. Their

> > > belief is that

> > > everyone else

> > > > but them needs medical intervention. Again,

> this

> > > population is

> > > much larger

> > > > than believed. Of the 50,000 Welcome to Oz

> > > members, about 80% live

> > > with a

> > > > loved one who has not even acknowledged their

> > > difficulties, let

> > > alone

> > > > sought therapy.

> > > >

> > > >

> > > >

> > > > These " non-consumers " with BPD may not utilize

> the

> > > health care

> > > system--

> > > > but their family members do. Because there is

> > > nothing

> > > obviously " wrong "

> > > > with the person and impulsive aggression

> (raging,

> > > etc.) occurs

> > > with family

> > > > members in private, these family members

> become

> > > isolated--they

> > > feel that

> > > > no one understands or would believe what

> they're

> > > going through. In

> > > many

> > > > ways, they are invalidated even more than

> family

> > > members with a

> > > consumer

> > > > in therapy.

> > > >

> > > >

> > > >

> > > > The needs of family members with non-suicidal

> and

> > > non-self-injuring

> > > > population must be addressed in educational

> > > materials. The gravest

> > > > attention needs to be paid to limit setting,

> which

> > > is not

> > > currently being

> > > > addressed, even with the inward-acting

> consumer

> > > population. I urge

> > > that

> > > > NAMI do so in its materials. Today, family

> members

> > > are trying to

> > > do this

> > > > without any guidance and may be making things

> > > worse.

> > > >

> > > >

> > > >

> > > > Address the 25% of the Consumers and

> > > " Non-Consumers " Who Are Male

> > > >

> > > >

> > > >

> > > > According to the DSM, one in every four

> consumers

> > > are male. They

> > > are in

> > > > prison, misdiagnosed, and even become batters

> (see

> > > Dutton

> > > studies.) In

> > > > effect, they have been abandoned-and so have

> their

> > > female

> > > partners. A full

> > > > 50% of the partners in the Welcome to Oz

> online

> > > support groups are

> > > female,

> > > > giving a much more realistic view as to the

> > > incidence in men.

> > > >

> > > >

> > > >

> > > > To address this, we need to do more research

> on

> > > men-and not just

> > > those in

> > > > the criminal system. Also, the pronoun " he "

> should

> > > be used in

> > > educational

> > > > materials; why not 25% of the time to reflect

> the

> > > DSM statistics?

> > > This

> > > > will at least make female partners feel

> included.

> > > >

> > > >

> > > >

> > > > The social costs of ignoring this male

> population

> > > are staggering:

> > > broken,

> > > > female-headed households are more likely to

> live

> > > in poverty. The

> > > needs of

> > > > biologically vulnerable children are less

> likely

> > > to be addressed;

> > > there is

> > > > a lack of an all-important male role model.

> > > Furthermore, if this is

> > > > addressed, the disorder is less likely to be

> > > " ghettoized " as a

> > > women's

> > > > disorder.

> > > >

> > > >

> > > >

> > > > Ms. Hall, thank you very much for this

> opportunity

> > > to give my

> > > input. If

> > > > requested, I can provide you with more

> information

> > > on any of the

> > > issues I

> > > > have mentioned. I have a great deal of written

> > > information that I

> > > would be

> > > > happy to give you permission to reprint as

> well.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > R.

> > > > List Manager, The Welcome to Oz Online

> Community

> > > for Family

> > > Members with a

> > > > Borderline Loved One

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >