Re: Peers Not Taking Us Seriously?

[Guest guest]

Hi Breana:

Its difficult, dealing with the looks you get from the public, you

don't look disabled, you walk okay, you look okay, in " their " eyes,

you aren't sick. " What's wrong with you? " " You just lazy, just full

of excuses. "

" They " just don't understand. How dare they say I'm not in pain, they

don't know me, they're not inside my body, they don't know what I have

to deal with in the mornings, when it is hard for me to get out of

bed, when it's hard for me to walk up the stairs, down the stairs,

some times its hard for me to hold a toothbrush, but they say it's

nothing wrong with me.

I'm not in a wheelchair or using crutches, I'm fine.

Then your friends and family start in. There's nothing wrong with

you, you're just lazy.

But when people who experience pain start in, it infuriating. What it

is with them, My pain is greater what are you talking about? I've

been in pain longer than you, I have a diagnosis.

Sometimes you just have to search for people who truely understands.

I think I vented too long. Take care, LaDonna.

But when it comes from other people with the SAME disease, it's

heartbreaking! How can I prove that I know what it feels like? I

can't, but I DO know. Why would they treat me like an " outsider " ?

It's not fair.

>

> Breana

>

[Guest guest]

Hi Breana:

Its difficult, dealing with the looks you get from the public, you

don't look disabled, you walk okay, you look okay, in " their " eyes,

you aren't sick. " What's wrong with you? " " You just lazy, just full

of excuses. "

" They " just don't understand. How dare they say I'm not in pain, they

don't know me, they're not inside my body, they don't know what I have

to deal with in the mornings, when it is hard for me to get out of

bed, when it's hard for me to walk up the stairs, down the stairs,

some times its hard for me to hold a toothbrush, but they say it's

nothing wrong with me.

I'm not in a wheelchair or using crutches, I'm fine.

Then your friends and family start in. There's nothing wrong with

you, you're just lazy.

But when people who experience pain start in, it infuriating. What it

is with them, My pain is greater what are you talking about? I've

been in pain longer than you, I have a diagnosis.

Sometimes you just have to search for people who truely understands.

I think I vented too long. Take care, LaDonna.

But when it comes from other people with the SAME disease, it's

heartbreaking! How can I prove that I know what it feels like? I

can't, but I DO know. Why would they treat me like an " outsider " ?

It's not fair.

>

> Breana

>

[Guest guest]

Thanks, LaDonna.

[Guest guest]

Thanks, LaDonna.

[Guest guest]

--- " Dymond " wrote:

>

> I'm not in a wheelchair or using crutches, I'm fine.

> Then your friends and family start in. There's nothing wrong with

> you, you're just lazy.

I had a so-called " friend " once - I was driving us somewhere and put

up my disabled parking placard, and she actually had the gall to

say " Oh, I feel so guilty using that! " I turned to her and

said " It's not FOR you, so why would you feel guilty? " Her obvious

implication was that she didn't think I was " bad enough " to need

it. Needless to say, we aren't really friends any longer.

As far as other people with pain judging you - I've quit

participating in another list for my particular condition (adhesive

arachnoiditis) for that very reason. I had there people tell me and

others on the list that we must not be in " bad enough " pain and

emotionally punish us if we made choices for managing our pain that

were different than theirs - for example, if we were able to keep

working or even do physical therapy.

And then, one person once said (referring directly to me!!)

that " maybe we need two separate lists, one for people who have had

this disease for a long time and really understand what it's all

about and how bad it can get, and one for those who are " new " to it

and obviously aren't in that much pain since they can still work. "

That put me through the roof! I may have only had this disease for

four years, while she's had to put up with it for 20, but it's not

necessarily a progressive condition so more years doesn't equal more

pain. The only thing that makes a difference in pain is the " type "

of the disease, and I'd gone zero to sixty in nothing flat, so to

speak, and developed the worst possible, most debilitating version

within the first few months. She had no business commenting on my

level of pain!

Besides which, I thought the whole point of having a support list

was for those of us newer to chronic pain to be able to learn from

those who have had to survive it for longer - separating the list on

the basis of who has " more pain " or had it longer was just arrogance

on her part, as far as I was concerned. Guess she needed something

to feel superior about. That's the only way you can look at these

people. I just refuse to interact with them, and eventually gave up

on that list.

OK, vent over! Thanks for letting me get that off my chest! I'm

just so grateful for the excellent moderation of this list that

keeps it a safe and positive and supportive forum, and for the

wonderful people on it who do so much to support each other without

any judgments like those....

Cheryl in AZ

[Guest guest]

--- " Dymond " wrote:

>

> I'm not in a wheelchair or using crutches, I'm fine.

> Then your friends and family start in. There's nothing wrong with

> you, you're just lazy.

I had a so-called " friend " once - I was driving us somewhere and put

up my disabled parking placard, and she actually had the gall to

say " Oh, I feel so guilty using that! " I turned to her and

said " It's not FOR you, so why would you feel guilty? " Her obvious

implication was that she didn't think I was " bad enough " to need

it. Needless to say, we aren't really friends any longer.

As far as other people with pain judging you - I've quit

participating in another list for my particular condition (adhesive

arachnoiditis) for that very reason. I had there people tell me and

others on the list that we must not be in " bad enough " pain and

emotionally punish us if we made choices for managing our pain that

were different than theirs - for example, if we were able to keep

working or even do physical therapy.

And then, one person once said (referring directly to me!!)

that " maybe we need two separate lists, one for people who have had

this disease for a long time and really understand what it's all

about and how bad it can get, and one for those who are " new " to it

and obviously aren't in that much pain since they can still work. "

That put me through the roof! I may have only had this disease for

four years, while she's had to put up with it for 20, but it's not

necessarily a progressive condition so more years doesn't equal more

pain. The only thing that makes a difference in pain is the " type "

of the disease, and I'd gone zero to sixty in nothing flat, so to

speak, and developed the worst possible, most debilitating version

within the first few months. She had no business commenting on my

level of pain!

Besides which, I thought the whole point of having a support list

was for those of us newer to chronic pain to be able to learn from

those who have had to survive it for longer - separating the list on

the basis of who has " more pain " or had it longer was just arrogance

on her part, as far as I was concerned. Guess she needed something

to feel superior about. That's the only way you can look at these

people. I just refuse to interact with them, and eventually gave up

on that list.

OK, vent over! Thanks for letting me get that off my chest! I'm

just so grateful for the excellent moderation of this list that

keeps it a safe and positive and supportive forum, and for the

wonderful people on it who do so much to support each other without

any judgments like those....

Cheryl in AZ

[Guest guest]

I think the thing we have to remember here is that a friend is one who helps you

remember how to smile when you have forgotten how. Many many people believe

they will feel better by downing others. In fact if you try to help them by

encouraging them and empathizing with them you will both feel better. Those who

criticize you normally are just wanting to make themselves feel better and it

actually works the opposite. They feel worse and so do you. No one knows how

another feels unless you have walked a mile in their moccasins, as the saying

goes.

I am also sorry that your husband and friends have deserted you. One thing

you will find here is understanding and compassion. You see, we have all been in

some form or another where you are. Life is hard and sometimes it helps to

remember that normal is only a setting on the dryer. Many men or women cannot

handle when someone they love is hurt of suffering. The marriage vows do say

for better or worse for sicker or poorer. The reason a marriage works is that

each values the other more than themselves and each strive to make the other

happy. It must be a two way street.

Enough about me, I just wanted you to know that someone does care. I

certainly do! Gwen In Kansas

" bijou.iluvu " wrote:

Hi. My name is Francine. I just joined this group today.

[Guest guest]

I think the thing we have to remember here is that a friend is one who helps you

remember how to smile when you have forgotten how. Many many people believe

they will feel better by downing others. In fact if you try to help them by

encouraging them and empathizing with them you will both feel better. Those who

criticize you normally are just wanting to make themselves feel better and it

actually works the opposite. They feel worse and so do you. No one knows how

another feels unless you have walked a mile in their moccasins, as the saying

goes.

I am also sorry that your husband and friends have deserted you. One thing

you will find here is understanding and compassion. You see, we have all been in

some form or another where you are. Life is hard and sometimes it helps to

remember that normal is only a setting on the dryer. Many men or women cannot

handle when someone they love is hurt of suffering. The marriage vows do say

for better or worse for sicker or poorer. The reason a marriage works is that

each values the other more than themselves and each strive to make the other

happy. It must be a two way street.

Enough about me, I just wanted you to know that someone does care. I

certainly do! Gwen In Kansas

" bijou.iluvu " wrote:

Hi. My name is Francine. I just joined this group today.

[Guest guest]

Sorry you had to go through that with the other group! That won't be happening

here. EVeryone is compassionate and understanding here.

" bijou.iluvu " wrote:

I really hope this group is better than the other one. I don't

understand how anyone can live with illness or pain and NOT have

feelings about it. Thanks for listening to all this but I am still

very upset about what happened

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

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min

with Yahoo! Messenger with Voice.

[Guest guest]

Sorry you had to go through that with the other group! That won't be happening

here. EVeryone is compassionate and understanding here.

" bijou.iluvu " wrote:

I really hope this group is better than the other one. I don't

understand how anyone can live with illness or pain and NOT have

feelings about it. Thanks for listening to all this but I am still

very upset about what happened

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

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min

with Yahoo! Messenger with Voice.

[Guest guest]

Sorry you had to go through that with the other group! That won't be happening

here. EVeryone is compassionate and understanding here.

" bijou.iluvu " wrote:

I really hope this group is better than the other one. I don't

understand how anyone can live with illness or pain and NOT have

feelings about it. Thanks for listening to all this but I am still

very upset about what happened

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

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min

with Yahoo! Messenger with Voice.

[Guest guest]

" bijou.iluvu " wrote:

>In my former group, one member with almost the same medical problem >I have

replied to my message. What she said has had me crying for >two days now.

hello Francine.

I was a more active member of this group several yrs ago and now i've

been lurking for several months.

I pity that woman that made those remarks to you. she must be very

bitter and lonely.

Support groups are places to have pity parties. i'm betting everyone

here has had one. humans need pity parties. how else can we consume

chocolate on a regular basis? ;>

Pity parties can also be cathartic. it's a way to get all those

feelings out of our soul. we have them, we move on.

If we want to live, we have to move on. once you stop moving on, you

can't live. although i still have much sorrow within me because of

what my illness have taken away from me, i have gotten so much back.

I have found true friends, friends i never knew were out there. and

for the ones that didn't abandon me, i have found acceptance of me

that i never knew was possible.

I've also had time to do things i enjoy but didn't have time for when

I was rushing around like our culture demands of an " able " person.

I have a large yard w/ many trees and for over a decade have actively

created nesting sights for birds. but i missed seeing them most of the

time. now i have the time to watch them, get to know them.

There is one extremely friendly chickadee in my yard. when i go to

fill the feeders, he lands on my hand and chatters at me. i answer him back, he

chatters back. i adore, *love* my conversations with this silly, cute, friendly

little bird.

I also feed feral cats, and ones that have been dumped by their evil

former owners. now i have time to rescue them by either adopting them

myself or finding homes for them.

And even though i can no longer teach, i've been tutoring some of the

neighborhood kids. in payment, i get my walks and driveway shoveled

when there has been a snowstorm. in the summer, they do light yard

work for me. the bonus is that now they've picked up my joy of

birdwatching and have set up feeders in their own yards.

Rot. i've rambled on and turned it into about me.

I hope something i've babbled about helps you.

Mira

[Guest guest]

" bijou.iluvu " wrote:

>In my former group, one member with almost the same medical problem >I have

replied to my message. What she said has had me crying for >two days now.

hello Francine.

I was a more active member of this group several yrs ago and now i've

been lurking for several months.

I pity that woman that made those remarks to you. she must be very

bitter and lonely.

Support groups are places to have pity parties. i'm betting everyone

here has had one. humans need pity parties. how else can we consume

chocolate on a regular basis? ;>

Pity parties can also be cathartic. it's a way to get all those

feelings out of our soul. we have them, we move on.

If we want to live, we have to move on. once you stop moving on, you

can't live. although i still have much sorrow within me because of

what my illness have taken away from me, i have gotten so much back.

I have found true friends, friends i never knew were out there. and

for the ones that didn't abandon me, i have found acceptance of me

that i never knew was possible.

I've also had time to do things i enjoy but didn't have time for when

I was rushing around like our culture demands of an " able " person.

I have a large yard w/ many trees and for over a decade have actively

created nesting sights for birds. but i missed seeing them most of the

time. now i have the time to watch them, get to know them.

There is one extremely friendly chickadee in my yard. when i go to

fill the feeders, he lands on my hand and chatters at me. i answer him back, he

chatters back. i adore, *love* my conversations with this silly, cute, friendly

little bird.

I also feed feral cats, and ones that have been dumped by their evil

former owners. now i have time to rescue them by either adopting them

myself or finding homes for them.

And even though i can no longer teach, i've been tutoring some of the

neighborhood kids. in payment, i get my walks and driveway shoveled

when there has been a snowstorm. in the summer, they do light yard

work for me. the bonus is that now they've picked up my joy of

birdwatching and have set up feeders in their own yards.

Rot. i've rambled on and turned it into about me.

I hope something i've babbled about helps you.

Mira