Re: Peers?

[Guest guest]

wrote:

>

> Does this happen to any of you? Do people look at you as though you're

> " faking it " or like you don't understand what pain and suffering are?

> UGH!

>

<sigh> Daily.

I have a wonderful chiropractor, he's not able to fix the problems with my

back, but he doesn't doubt my pain for a moment, so he authorized a

permanent disabled parking placard. Unless I actually use my rollator, I

don't look disabled, just fat, so I get a lot of dirty looks.

That's one of the big reasons I'm here, to be able to talk with people who

actually " get it " .

[Guest guest]

wrote:

>

> Does this happen to any of you? Do people look at you as though you're

> " faking it " or like you don't understand what pain and suffering are?

> UGH!

>

<sigh> Daily.

I have a wonderful chiropractor, he's not able to fix the problems with my

back, but he doesn't doubt my pain for a moment, so he authorized a

permanent disabled parking placard. Unless I actually use my rollator, I

don't look disabled, just fat, so I get a lot of dirty looks.

That's one of the big reasons I'm here, to be able to talk with people who

actually " get it " .

[Guest guest]

b_ostensen wrote:

> I have a problem with people who are supposed to be

> going through the same things as us, but get

skeptical about the level of my own pain.

Hi Breanna

Having chronic pain, doesn't necessarily mean someone

is compassionate, nor empathetic. They believe they

suffer more than anyone else.

This doesn't sound like a supportive group of people.

It sounds more like a pity party, that only a few

select people can join. You might want to rethink

participating with that group, if a lack of kindness,

and empathy is their prevailing attitude.

A support group should provide information, and give

the participants a nonjudgmental place to express

themselves.

Sometimes the people who should know better, just

don't.

Kaylene

Moderator

__________________________________________________

[Guest guest]

Hi Breanna,

I would guess that a lot of people who live with chronic pain

deal with this. Part of he reason is that how most people imagine

how you are supposed to look and act this is primarily derived from

various media outlets we are all supposed to lying in bed writhing or

screaming in agony like a person who has just been severely injured

I do deal with it in part because I ma in reasonably good shape. I

try explaining that with out my \medications I would not be in

reasonably good shape. Most of us do not routinely have the body

language of what a person in a lot of pain would seem to show. Though

if you pay attention it is there. Usually we do not constantly have

expression of distress as we are taught socially that it

is " unacceptable " .

I do from recent experience know it feels to have people not believe

you until they see that you cannot do something or a outward display

of pain .

It is even worse when a group of people who are supposedly in the

same situation do not believe you. There is a lot of social dynamics

involved that would take me a good hour to explain verbal never mind

typing.

Part of why I tend to avoid a lot of support groups. In particular

face to face type.

We also face a lot of other obstacles, the meds we take, and people

are not well educated about them and what pain is. How it affects

you emotionally in or finding relationships, employment. Family even

if they are supportive. I have had many people both " friends " and

people who are acquaintances and even a triage nurse in a ER

who did not know my mother was a supervisor in a different unit in

the hospital needless to say she is no longer employed . I did

write a letter to there CEO of the hospital and other CC to her .

I am willing to bet most every one on this list has dealt with this.

One thing I will add is often a professionally run group works better

as people tend to be more respectful and listen to that

person .

Emailing a people on this list it is polite to ask if it ok first

but I do not mind if some one sends me a email asking question or

just offering support .

Best of luck and feel free to send me a email if you want a

person to talk to

Rick

>

> I have a problem with people who are supposed to be going through

the

> same things as us, but get skeptical about the level of my own pain.

> I'm not talking about anyone from this group. But recently I was

> talking to some other " friends " that also have Fibro/Chronic Pain.

> They started complaining of their many symptoms, and how it effects

> their daily life, as if I didn't understand or as though their pain

> was somehow worse than mine.

[Guest guest]

This happens to me all the time. I am so used to saying it at the grocery store

that now I say the same thing. When they don't ask if I need help out, I say I

look normal but I am not. I ahve had brain surgery and the process of putting

things in my car from the cart will cause me to pass out. I know you do not want

ot pick me up off the floor. So thanks for asking if I need help, I appreciate

the help.

It is very common for my teen daughter to be told that her mom, (me) would

probably feel better if I lost weight and did something. She just looks at them

and says when you ahve had brain surgery then you can say something to me, until

then I would appreciate it if you would not mention this again. She also has had

me come in to speak to Science classes when they are talking about cells and

tumors, etc... Everyone at her high school knows what is going on and they are

wonderful.

So basically I know it is a very real problem, but one that will not go away any

time soon. The worst diseases in the world are not seen as real to other people

because you don't have a visible problem. When I was in social work I used to

say the worst abusers in the world are actually the best abusers because they

can abuse and no one sees the marks when they look at the abused. So just tell

them what you want and find people who will support you. Not all support groups

are created equal. Gwen

their daily life, as if I didn't understand or as though their pain

was somehow worse than mine.