Re: FEW or MANY friends -- For us with our invisible disabilities/fatigue

[Guest guest]

Hi Caro:

Your observation about your family not having extra energy at the end of

the work day for social activities is interesting as I also was like

this as were my parents and yet I cannot see HEDS in them as far as

dislocations or fractures or lots of sprains and used to think others

just had more need for socialization, but I wonder? We definitely were

a family of women who needed to elevate our feet when watching T.V. We

particularly noticed this when among friends and we had the need to

elevate our aching feet.

Regards, Bernie

FEW or MANY friends -- For us with our invisible

disabilities/fatigue

Hi all,

I have friends I can count on my one hand. The ones that stick/stuck

with you

through the worse and best of times. I am sitting here wondering how

many of

us with EDS and other invisible disabilities have many friends. From

work in

particular. The few friends I had who use to visit me got tired of me

never

visiting them. A drive of more than 30 minutes was pure misery. Too bad

I did not

know why years ago.

I was thinking how as a rule at work, I never hung out afternoon or

evenings.

I went straight home to recover for the next work day. The idea of going

out

or going out lunch time with the guys to the mall was unbearable. So in

the

end I find I had few friends at work.

Of course my older age group did not help. But even in my twenties and

thirties I was a home body :-). So, a trip the mall was VERY rare.

Looking back at

my childhood my parents were the same way. They went to work and came

home.

They took their pain meds and rested until the next day of work. Caro

[Guest guest]

Hi Caro:

Your observation about your family not having extra energy at the end of

the work day for social activities is interesting as I also was like

this as were my parents and yet I cannot see HEDS in them as far as

dislocations or fractures or lots of sprains and used to think others

just had more need for socialization, but I wonder? We definitely were

a family of women who needed to elevate our feet when watching T.V. We

particularly noticed this when among friends and we had the need to

elevate our aching feet.

Regards, Bernie

FEW or MANY friends -- For us with our invisible

disabilities/fatigue

Hi all,

I have friends I can count on my one hand. The ones that stick/stuck

with you

through the worse and best of times. I am sitting here wondering how

many of

us with EDS and other invisible disabilities have many friends. From

work in

particular. The few friends I had who use to visit me got tired of me

never

visiting them. A drive of more than 30 minutes was pure misery. Too bad

I did not

know why years ago.

I was thinking how as a rule at work, I never hung out afternoon or

evenings.

I went straight home to recover for the next work day. The idea of going

out

or going out lunch time with the guys to the mall was unbearable. So in

the

end I find I had few friends at work.

Of course my older age group did not help. But even in my twenties and

thirties I was a home body :-). So, a trip the mall was VERY rare.

Looking back at

my childhood my parents were the same way. They went to work and came

home.

They took their pain meds and rested until the next day of work. Caro

[Guest guest]

You're right, we have much less time and energy to schmooze, so we

shouldn't expect to have as many friends. As well, as Aristotle

pointed out, most friendships are based on some form of exchange of

goods, services, or whatever else - and we aren't usually in a

position to offer to help someone move, or do that whatever else. My

relatives are bitter about my not helping more with their children

over the years, and somehow don't think the fact that I don't have any

kids is just further proof of my laziness or moral turpitude, not

evidence that my disability might have been inconvenient to me, too,

and not just them. So it goes.

But being different doesn't help. Scapegoating is a very human

tendency. Just not being able to show up reliably can engender

bitterness. Both in Academic philosophy and theatre, EDS was costly.

In Philosophy, (MA) those got ahead who could spend an average of at

least two hours a day drinking with their profs - I simply couldn't. I

was therefore never taken seriously as a student. (Admittedly,

academics drink more than almost any profession, and philosophers more

than any other segment of academia.)

In theatre, schmoozing was everything - and who you knew, in a very

inbred art scene where friends trading grant money with friends to get

ahead was the norm. Trouble for me.

I've also found that because I effectively age much faster than my

peers; in five or ten years, what I can do changes a lot, and my

(mostly former) friends have tended to sharply resent these changes or

just disbelieve them, or find them too inconvenient. We form silent

and unconcious contracts with others when relationships start, but

changes from EDS tend to break those unspoken contracts after a few

years, in my experience.

P.S. I'm experimenting with blogging, at

completeconfusion.blogger.com, don't know if I'll keep it up, and I'll

repost (my part of) this there.

> Hi all,

>

> I have friends I can count on my one hand.

[Guest guest]

You're right, we have much less time and energy to schmooze, so we

shouldn't expect to have as many friends. As well, as Aristotle

pointed out, most friendships are based on some form of exchange of

goods, services, or whatever else - and we aren't usually in a

position to offer to help someone move, or do that whatever else. My

relatives are bitter about my not helping more with their children

over the years, and somehow don't think the fact that I don't have any

kids is just further proof of my laziness or moral turpitude, not

evidence that my disability might have been inconvenient to me, too,

and not just them. So it goes.

But being different doesn't help. Scapegoating is a very human

tendency. Just not being able to show up reliably can engender

bitterness. Both in Academic philosophy and theatre, EDS was costly.

In Philosophy, (MA) those got ahead who could spend an average of at

least two hours a day drinking with their profs - I simply couldn't. I

was therefore never taken seriously as a student. (Admittedly,

academics drink more than almost any profession, and philosophers more

than any other segment of academia.)

In theatre, schmoozing was everything - and who you knew, in a very

inbred art scene where friends trading grant money with friends to get

ahead was the norm. Trouble for me.

I've also found that because I effectively age much faster than my

peers; in five or ten years, what I can do changes a lot, and my

(mostly former) friends have tended to sharply resent these changes or

just disbelieve them, or find them too inconvenient. We form silent

and unconcious contracts with others when relationships start, but

changes from EDS tend to break those unspoken contracts after a few

years, in my experience.

P.S. I'm experimenting with blogging, at

completeconfusion.blogger.com, don't know if I'll keep it up, and I'll

repost (my part of) this there.

> Hi all,

>

> I have friends I can count on my one hand.