An experiment that works with doubters

[Guest guest]

We've been addressing the post initiated about our

friends/family members that don't understand FM, CFS, etc.

I've been living with FM & CFS, and a few other complications, for

three years.

Several friends really thought I could pop a tylenol and keep going.

They really grilled me one afternoon calling me everything shy of

lazy. After reading about a fund raising idea for FM, I found old

cloth pins (the kind you squeeze open with springs) and took them to

our next get togther.

I challenged friends to put a clothes pin on a finger and leave it on

during our entire get together. Needless to say, most lasted about 15-

20 seconds. I took out a bottle of Tylenol and offered them one to

keep it on. They knew the tylenol wouldn't help.

Of course, they looked at me like I had bats in my belfry, but then I

said, " I'll leave here with the same intense pain all over my body,

without any relief. You had a choice. You could take the clothes pin

off and did so in less than a minute. Those of us with FM can't and

many of us cannot take the one pain relieving option currently

available. "

Those friends are still with me. They also understood, after the

experiment, when I told them I feel like I've had mono for three

years.

While I made a painful point, it means friends understood, I still

have a chance to go out once a month for a cup of coffee with a group

of compassionate people, and maybe we've all grown as a result.

Anyone else try something that really helps others understand our

challenges? It was great reading all the responses to 's post.

We are not alone!

DeAnn

[Guest guest]

Hi De Ann!

That is absolutely amazing! That is a great way to get

people to understand or atleast " experience " what it

is like for a few seconds! I have

FMS,CFS,MPS,RA,Connective tissue disease, liver

disease and a few other issues. I hate pain, but its

something I have learned to deal with in the past 10

years with FMS. I have a horrible time dealing with

the fog and the feeling of not feeling like I'm here,

like my head is floating! I suffer with anxiety and

that makes it worse. My mom used to tell me " you will

be alright " which is a great thing to tell someone

with panic as they need to calm down. Recently, she

has had problems with her potassium and electrolyte

levels and is on medication for it. She gets the same

funny head feelings and now I get to remind her that

she will be alright when it bothers her. The first

thing she said to me was " NOW I know how you feel! And

it is scary! " I just hope her levels are straightened

out soon so she feels better. Thank you for sharing

this creative way to make others aware

--- dnichels wrote:

> We've been addressing the post initiated

> about our

> friends/family members that don't understand FM,

> CFS, etc.

>

[Guest guest]

DeAnn,

great post. I'm so happy to hear that your friends " got it " , rather

than assuming you were being dramatic.

For fatigue, I think the following works to address those people who

tell you to just " push through it " or " you're not trying hard enough "

or " I can do it just fine, you're just being weak/lazy " :

- have them hold their arm straight out at their side, at shoulder

height. You can do this with a weight or something heavy in their hand

like a can or something if you want the experiment to go quicker.

- tell them they can't put their arm down until you say so.

- when you see their arm start to lower a bit tell them " put your arm

back up " , move it back to shoulder height if you need to.

- when they complain their arm is getting tired, put your own arm out

for a second and say " I can put my arm up just fine, I'm not tired,

you must be faking it " , and have them put their arm back up

- when they complain it's starting to hurt insist they put it back up

and say " it doesn't hurt when I do it, you're just making this up "

- every time it starts to lower tell them to put it back up (they

won't be able to keep lifting it back to shoulder height, it'll keep

getting lower, but they'll try to hold it higher) and say:

" wow, you're such a wimp, I can hold my arm out here (do it quickly)

so easily "

" you should hold a weight while you're doing that, it'll make you

stronger "

" you're really not trying hard enough, you don't really want to succeed "

" I don't understand why this is so hard for you, everyone else can do it "

" I'm so tired of you complaining about something so simple "

- when they get to the point of muscle exhaustion and can no longer

force it back up say " why can't you just make yourself do it? you're

just not trying hard enough. everyone else can do it. look at me I can

do it [lift your arm briefly]. really, you're just too lazy to try "

- when they finally put their arm down tell them:

" See how tired your arm feels? That's how my whole body feels, every

day. Now picture that your arm never felt right again, that you had to

feel that exhaustion in your arm every day. And then you still had to

do all the normal tasks and chores while your arm was weak and tired

like that.

See how bad it felt to have someone talk to you like that? See how

unreasonable it was to suggest you should just try harder? That's how

people treat me all the time, including yourself.

Now multiple that experience by 10 and you know what I go through

every minute of the day, every day, every year. "

It's harsh, but it helps them understand both the physical sensation

and the senseless berating many CFS sufferers go through. Sometimes

you need to go to extremes (like the clothes pins) to wake people up.

Some people will always think you're just making it up, that there

isn't a real condition. But if they don't have any sense of empathy or

understanding after something like that experiment then they aren't

worth having in your life.

It can also help to send them links to medical articles and show them

that both the CDS and the World Health Organization recognize CFS as a

real condition. So when they debate the existence of your condition

you can say " so you have no medical training, but you know more than

all the doctors worldwide? "

Just some thoughts,

Dyno

> Several friends really thought I could pop a tylenol and keep going.

> They really grilled me one afternoon calling me everything shy of

> lazy. After reading about a fund raising idea for FM, I found old

> cloth pins (the kind you squeeze open with springs) and took them to

> our next get togther.

[Guest guest]

I LOVE this idea DeAnn........pure brilliance!

Jane

Jane

[Guest guest]

Dyno,

WOW! As one blessed with a vivid imagination, I want you to know that

really put blazing pain and fatigue in my mind. I don't think my

friends need another thunk of reality, but I can see where your

suggestion can be very effective. It is unfortunate that people can't

believe and trust another, but then we look healthier than sick.

Where is a magic wand of understanding when the world needs it the

most?

DeAnn

[Guest guest]

DeAnn,

yeah, as I see it that experiment is " pulling out the big guns " . Use

sparingly.

I always want to laugh when people tell me I look " healthy. " I

constantly have huge dark circles under my eyes, my eyes often get that

hollow look, my skin is either blotchy or undead-chalky, I have no

muscle tone, for awhile my hair was falling out, there is often a

pained expression or pain lines on my face... um, exactly how does this

look " healthy " ? Are they using the Leper Standard of Health? Well,

she's got all her limbs, so that's a 1 on the Leper Scale, yep,

healthy. " I've never understood what people are expecting chronic

illness to look like. Perhaps they think if you're not wasting away

with visible lesions you're not sick? People are strange.

Dyno

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

Re: An experiment that works with doubters

Posted by: " dnichels " cr8vwrtng4me@... dnichels

Mon Apr 7, 2008 2:29 pm (PDT)

Dyno,

WOW! As one blessed with a vivid imagination, I want you to know

that

really put blazing pain and fatigue in my mind. I don't think my

friends need another thunk of reality, but I can see where your

suggestion can be very effective. It is unfortunate that people

can't

believe and trust another, but then we look healthier than sick.

Where is a magic wand of understanding when the world needs it the

most?

DeAnn

[Guest guest]

DeAnn,

yeah, I consider that experiment " pulling out the big guns " . Use

sparingly.

and I have no idea what people expect chronic illness to look like.

maybe they think if you're not wasting away with visible lesions and

bald spots you're ok?

Dyno

P.S. -- sorry if this appears twice, my mail is being glitchy