Re: a friend who responds to CFS with anger

[Guest guest]

Hi :

My question is why can't your friend come visit you??!!

I've yet to get the answer to that myself. As we have moved

around for 24 yrs as a military family. I have traveled to

see my family and friends. Even with an infant!! Which those

who have traveled with an infant!!! Know!!!

We have actually moved within in 3 hrs of my family and with in

blocks to a couple of miles of old friends. Let's include neighbors

that don't have time either!!!

Time is the word!! We have who are disabled have the time, but

no energy or have pain!!!

I try not to be bitter!! But it's hard. Not only have I lost " me "

to loose friends also. They make excuses............etc.....

[Guest guest]

Tell her that it is not “stubbornness” or “control issues”, but your level

of disability that prevents you from coming to see her. If she does not

“get” this, show her the functional ability scale (has been posted here

lots) and where you actually are on it. And OT should be able to understand

that. Tell her that if she wants to help you, she could come to where you

are and help you with all the tasks that you are facing now, as that is the

help you need. Tell her she is not “competent to assist you in life

transitions” if she does not understand how disabled you are, or how risky

such a trip would be at this point. It sounds like she is minimizing and

psychologising your situation at the moment. Good luck with this, and I hope

she gains better understanding. XOX Aylwin

[Guest guest]

AFTER READING THE LETTER THAT SHE SENT YOU i WOULD DUMP YOUR " FRIEND. " I DON'T

MEAN TO SOUND CALLOUS, BUT I THINK THAT SHE SUFFERS FROM PASSIVE AGGRESSIVE

DISORDER(GOOGLE IT) IF YOU HAVENT HAD THE PLEASURE OF DEALING WITH SOMEONE WITH

THIS DISORDER. (LOL). SHE DUMPS IT ON YOU BY SAYING THAT YOU HAVE CONTROL

ISSUES. I WOULD NOT WASTE MY PRECIOUS ENERGY ON SOMEONE LIKE THAT. THEY ARE NOT

WORTH IT. YOU DON'T HAVE TO RESPOND TO HER AT ALL. UNFORTUNATELY, I HAVE FOUND

THAT SOMETIMES THOSE WHO WORK IN HEALTHCARE WHOM YOU WOULD EXPECT TO BE EXTRA

COMPASSIONATE AND INTERESTED IN LEARNING ABOUT THESE DISEASES ARE NOT AND DO

NOT. I HAVE EXPERIENCED THIS MANY TIMES IN MY ALMOST 31 YRS. OF DEALING WITH

THESE ILLNESSES. I AM SORRY AS I KNOW HOW HURTFUL THIS CAN BE. TRY TO FIND

OTHERS WHO REALLY DO CARE AND WANT TO LEARN. I KNOW THAT THIS IS HARD TO DO. IT

IS USUALLY OTHERS WHO HAVE THESE ILLNESSES THAT WE OFTEN GET SUPPORT AND

UNDERSTANDING. DIANE

[Guest guest]

>

> After reading that many of you have experienced the same " backing

away " from friends, I want to share this story:

>

> I received a letter (below) from a long-time friend who has wanted

me to come visit her far away. She says a visit will offer me rest

and time away from stress. I been consumed with selling a house,

moving little by little, & finding disabilty housing. I'm still

moving & do not yet have a place to live. For the most part, I am bed-

ridden. I do not have a support group or a doctor who can treat me.

>

> I find it unbearable to travel, whether to the grocery store or

across the country. I told my friend that a trip could be very hard

on me. I might end up spending our visiting time in bed recouperating

from the travel. I haven't ruled out going to visit but until I have

settled in my new lodgings and found social services, I can't go

anywhere, yet.

>

> The words in her letter were painful to read. I feel judged and

accused. I've been struggling with a way to respond to this letter.

I've sent articles to this friend about CFS/Fibro, a DVD, my own

descriptions, etc. She is an occupational therapist. I don't

understand what it is that she wants me to do. Can someone help me

with words to respond?

>

>

>

> Here is the letter:

> " I think of you everyday. I HOPE YOU HAVE A TRUE SUPPORT NETWORK IN

YOUR AREA.

> Because you know I can do nothing for you from so far away. Your

last letter

> made it sound that (a trip to or moving to?) Chicago was not an

option.

>

> Also- your control issues also make it impossible to assist you. I

love you and hate that you are so

> stubborn and lost. I am totally competent to assist you in life

transitions

> (but not medically and therapeutically) if you can trust me. "

Hi ,

I can't help thinking that there is no way she would respond this way

if you had another disease like cancer or MS. She obviously doesn't

believe you.

I think that if it was me I would have to say " I can't believe that

you do not understand the concept of being too sick to travel " .

Maybe tell her that her support (even at a distance) is appreciated

and that you would hate to lose it.

I suppose you will have to go into explain again why you can't

travel, and maybe point out that you would love to, if you could.

Ask her to please try and understand the realities of how it actually

is for you.

Sounds like a really horrible letter to receive, it must have been

extremely hard to read. I really don't know that anything that you

respond with will make them understand though. Some people just

never 'get' it, usually because they don't really try. They are the

stubborn ones, not us! Unfortunately, most of us learn that those

people are just sucking our energy away, by futiley trying to make

them understand.

Sorry to sound so negative, I really hope they can be turned around.

When all else fails, concentrate on the positive things, like the

people who stick by you.

goodluck and take care, ness.

>

[Guest guest]

When corresponding by email, or written letters, there

is a very large potential to have misunderstanding or

communication problems. We cannot hear the tone of

ones voice to hear the expression in it. Sometimes

those that love us and care about us, want to see us

get better, want to see us thrive. Our illness is

hard on us but also on those that love and care for

us. They get frustrated that they cannot make it

better, or they want to help us make new lives with

our illness. Its possible she was just frustrated

that she helps people every day but cannot seem to

help you. This doesn't mean its her fault or yours.

Just frustration with the situation. I used to have

these issues with my own family, but since I now have

RA and a liver disease on top of the FMS, MPS, CFS,

they can actually SEE my disability. My doctors

helped talk to them so they would quit stressing me

out and making me more anxious. I hope the fact that

she upset you serves as a wake up call that it takes

time and a lot of work to understand what we really go

thru. Good luck:)

--- diane lindeman wrote:

> AFTER READING THE LETTER THAT SHE SENT YOU i WOULD

> DUMP YOUR " FRIEND. " I DON'T MEAN TO SOUND CALLOUS,

> BUT I THINK THAT SHE SUFFERS FROM PASSIVE AGGRESSIVE

> DISORDER(GOOGLE IT)