Re: NCC- need help w/ coping

[Guest guest]

,

My heart broke when I read your post. I have gone

through a similar situation in my family, and I know

how painful it can be. At a time like this, we need

our support system more than ever!! Yet, if your

condition is anything like mine (and probably like

many in this support group's), you *look* normal on

the outside...which can be so confusing to an outside

observer--it would make perfect sense to them if we

were missing a leg, or if we were confined to a

wheelchair with an obvious injury or deformity, but

since we LOOK normal, why can't we ACT normal?! There

have been days where I've said to myself " if one more

of my friends say to me 'awww, you don't feel well

today? Well, you LOOK great!!' I'm gonna puke! "

Is there any chance that you can get your family

involved in some education program about your

condition? At the chronic pain management program

that I recently attended, a major part of the program

is family education--if the family doesn't understand

the effects of the person's condition, and what it's

like to live with chronic pain, then you can expect

problems like the ones you're describing. And often

having a therapist or a doctor be involved in the

education process really helpes get the family's

attention--when it's just you saying all this, it's so

easy for them to dismiss what you're saying (you're

being dramatic, exaggerating, wanting attention,

etc...I've heard it all from my parents...), but when

a *doctor* says it, it's suddenly much more valid.

And we NEED our families!!

In my case, there is a part of my family that is

really disfunctional (and didn't want to participate

in the family education), and I was on the verge of

cutting them off--but to cut them off would have meant

that I would lose contact with the *rest* of the

family. And that would have been a major loss,

because we are a very close-knit group, and usually

all get together at holidays and such. So, my pain

coach and I worked out a way to " neutralize " the toxic

nature of that branch of the family while still

allowing me to be around them...it took some doing,

and definitely wasn't easy, but it was worth it. I

hope that you won't find yourself pushed into having

to cut off from your family entirely, .

When I think about your situation--the fact that you

overheard your husband talking that way to your son,

especially your 11-year old son (!!)--I think your

family definitely needs to learn how to be more

supportive. I hope they would consider going to some

kind of family education/counseling, even just for a

session or two. It's also VERY helpful for *them* to

have a safe place to express their own feelings of

frustration, helplessness, sadness, and confusion--I

would be shocked if your husband and son DIDN'T have

those feelings, but my guess is, they don't want to

make you feel worse by expressing them to you...but

they need to have somewhere to express them. A family

education/counseling/support group kind of thing would

be perfect for that, PLUS, they would hopefully come

away with much more information about your condition

and how to be supportive of you.

Sorry I wrote so much! Yes...I'm a therapist...and it

shows. :^)

Ginger

--- medicspon wrote:

> Hi All-

>

> I had a very bad day today. And to top it off- my 11

> y/o son told me

> he needed to talk, he heard my father and brother

> talking.

[Guest guest]

Hi,

Now there's the real kicker, it's bad enough when they roll their eyes

at us~ but when they offend our sons and our daughters ~

our claws just naturally want to come out. We're wired that way!

My heart goes out to you! And I do understand.

As for me, what I do to cope- because I have my husband's family

nearby and they're still raving about 'how well I'm doing'?? how great

my heart surgery went??? When NONE of that is true- when I'm gimping

around and hardly functioning, unable to drive and unable to walk

through a store- while the Rest of the world observes including

medical professionals- saying- are you ok- do you need to go to ER? or

you neED to go to ER.

And they say what they say. Well, I just let them say it. You have

to know the people. Some people are beyond educating. And you can

love them anyway... from a distance. I am a mile from my husband's

parents and I don't see them much. Family dinners I endure- and

perform as quickly and gracefully as possible.

I don't know how- if you are anticipating surgery your family can be

treating you in the same way. Mine has a little excuse since my dx's

are still up in the air some. I'm so sorry-

I hope that you can find support, people with arms that can touch you-

and your son, family- in the days to follow. You deserve it!

prism

(if i squint into the harsh sunlight, i'll find my own rainbow)

>

> Hi All-

>

> I had a very bad day today. And to top it off- my 11 y/o son told me

> he needed to talk, he heard my father and brother talking.I've been

> posting alot... trying to get answers and be accurately informed

> before I see Dr. B about my upcoming surgeries.

> My dad was telling my brother that I was upset today and he thought

> that I was on our group too much, and getting the wrong information.

> My brother responded (quote my son) in an " irritated " voice that

> my " conditon isn't bad " and " no big deal " " whats the matter with

> her " . It bothered me that they would disuss this in front of my son.

> The comments- I'm used to (this was nothing compared to the usual)-

> I can't tell you how many times I have gotten so sick over this) My

> husband doesn't want to be around certain family because of this. I

> know they don't want to understand. I am learning to accept that.

> But, talking like that in front of my son seems so wrong.

>

> My son said he was mad and wanted to say something to them but was

> too scared. I've been very sick for the past month, some days I

> can't even shower by myself and I'm too vane to ask for help.

>

> I think its time I " cut off " a few people in my family. It seems some

> are more harm than good. Am I over-reacting? Its hard ....I love my

> nephews. I don't want my nieces or nephews hearing any of this. If

> someone else has experienced this, can you please tell me how you

> dealt with it? I can't ignore it anymore and I'm too sick for useless

> arguements. Just when I need them the most. I have a very large

> immediate family, we all live within minutes. The biggest joke is

> they swear we're a " tight " " close knit " family. It doesn't help my

> situation or my kids. Any input would be helpful..,

>