Re: how do you explain to others what it is like to have CFIDS

[Guest guest]

,

I've had both Fibromyalgia and CFIDS for over 25 years. I'm 50 now. I really

don't think others can understand, no matter how hard they try. I know it's

frustrating for them to think they feel the same way and to no understand just

how exhausted we are, along with all the other symptoms. All you can do is

explain your symptoms and maybe what you have difficulty doing each day. You

can give them some literature to read or direct them to sites with some good

information. Hopefully, they'll read it. I really don't think they would ever

understand unless they experienced it themselves.

I know my family loves me, but no matter how much I try, they don't understand.

I think most of them think I'm " just depressed " , which is aggravating. I've

tried to explain and I've told them some of my main symptoms. Maybe they're

afraid they could also get sick?? I don't know. I took it personally and I

felt like they just must not love me for years. Now I'm at the point that I

know they'll never get it, but they do still love me.

I'm sorry I couldn't help you more.

Sue

>

> I've had CFIDS for 17 years, the people in my family and friends, they " just

don't get it " and I thought I had seen on some CFS site, a informtional piece,

that one could print out and give to others, so they could understand, All I

hear when I say I have CFS, is " OH, I am chronically fatigued too " . I get so

tired of hearing that. Any suggestions ? in Oregon

>

[Guest guest]

Hi ,

This is a such a good question and I've come to the conclusion it is equivalent

to asking a blind person to see, impossible really.

I've had cfids for 24 year. In the early years, near death and obviously sick

for any that cared to take a look, bedridden and unable to even walk to the

bathroom. As time went by, I learned various things that helped and got better

only to relapse. People understood a week of illness, but as the weeks turned

into months, and the months turned into years, they didn't comprehend the word

" chronic " . I really Itried to explain and thought I could teach them. Often I

was told, " take care of yourself. " But what I discovered was what they really

meant was, " take care of yourself after you take care of me. " Even if that was

simply a cup of coffee, or a visit when they " just had to get away " that got to

the point I simply could not do. I was having back to back relapses and was in

the survival mode. I knew I had to make some changes if I was going to survive

this.

Usually there will be 1, or maybe a couple of people, in our life that can be

discribed as " energy suckers " . We all have them. When healthy, they can be

handled, but when so ill, it can be very detrimental. For me that person was my

sister-n-law. Every time I relapsed, she would ask me what it's like, how I

felt? Every time I explained it to her again, and again, and again. It

literally went in one ear and out the other only for her to again ask me what it

is like and how i feel at the next relapse. It became a real problem becaue she

was sucking up what little energy I had to survive this; at my house every day,

sometime once, but more often than not, twice, and even five times a day. It

was sucking the life out of me and I knew I had to put some boundries up. So I

wrote her a long (4 page) letter explaining as gently and kindly as I could all

that this illnes entails and then asking her to limit her visits to only once

or twice a month.

It's sad to say, that sometimes it is family, not strangers, that just don't get

it. She took great offense and all she precieved was, " Gail doesn't want me at

her house. "

If those that are the closest to use who are suppose to love and support us do

not get it, how are we ever to expect the average person to understand. It will

never happen. It's actually, imo, a waste of the air we breathe to try and

explain it.

Now if people ask me, I tell them to google it if they to learn about it. After

all everybody has a computer now a day. <chuckle> They won't even do that.

Imo, you/we really are wasting your/my time trying to explain that could be

better used in trying to find ways to help ourself. And it only took 24 years

to figure that out.

Gail

>

> I've had CFIDS for 17 years, the people in my family and friends, they " just

don't get it " and I thought I had seen on some CFS site, a informtional piece,

that one could print out and give to others, so they could understand, All I

hear when I say I have CFS, is " OH, I am chronically fatigued too " . I get so

tired of hearing that. Any suggestions ? in Oregon

>

[Guest guest]

Hi ,

 

 

I have stopped using the term Chronic Fatigue Syndrome as it unfortunately leads

to immediate misperception too often.  On January 24th, Marti posted that the

description on our homepage has been updated to reflect current international

concensus and criteria.  The subject of that post was " recent thoughts. "  

Maybe that's what you're asking about.  It explains why ME, Myalgic

Encephalomyelitis is more appropriate and gives I think, an accurate

description.  I'm keeping a copy of it handy. I tell people that I have ME

and that it's a neurological disease.  And to people in my life or those I

meet who bring up old mis-beliefs, I say something like, " That's old information

that has been disproven. "   I also find myself saying, " They don't know that

yet " whenever it applies.   

 

As far as getting people to understand what we actually go through

symptomatically, I realized a few years ago that I probably wouldn't

" get "  ME either if I hadn't lived it.  I sometimes say to doubters,  " I

understand when people don't get some of this.  I wouldn't have gotten it if I

hadn't lived it either. "   It's true.  I would have never understood the

difference between tired and fatigue or brain fatigue without the

experience.     

 

I feel very fortunate that my immediate family knows who I was before

ME and remembers I'm still me only with a difficult illness now.  Sometimes

being misunderstood and invalidated by others piles up on me and gets to me. 

Sometimes.  Not nearly as often as it used to because I know who I am too and

remind myself of it when I start to get down.  We are accountable

normal people who happen to have an illness that hasn't been completely figured

out yet. I spend very little time defending legitimacy.   

 

Hang in there.  Hope this helps.

Kay     

 

         

 

 

 

________________________________

From: w_bignotti <w_bignotti@...>

Sent: Saturday, January 28, 2012 9:02 PM

Subject: how do you explain to others what it is like to

have CFIDS

 

I've had CFIDS for 17 years, the people in my family and friends, they " just

don't get it " and I thought I had seen on some CFS site, a informtional piece,

that one could print out and give to others, so they could understand, All I

hear when I say I have CFS, is " OH, I am chronically fatigued too " . I get so

tired of hearing that. Any suggestions ? in Oregon

[Guest guest]

{Moderator: This will be the last post on this topic as we have ventured into

support issues. Support type questions are allowed for new members for their

first post and there have been some excellent responses to help this new member.

Normally, I check every link but there are too many in this response to verify.}

answer to

I've had CFIDS for 17 years, the people in my family and friends, they " just

don't get it " and I thought I had seen on some CFS site, a informtional piece,

that one could print out and give to others, so they could understand, All I

hear when I say I have CFS, is " OH, I am chronically fatigued too " . I get so

tired of hearing that. Any suggestions ? in Oregon

Hi all

This topic is a world wide issue for us with mecfs

I have been married for more than 17 years myself and had mecfs for over 9 and

my wife let alone my family and hers still do not fully " get it " . So our

marriage has greatly suffered because of it. My wife or family have never even

been to see my specialist or any other doctor or psychologist about my illness

with me! Lucky I am only mostly house bound and can do some errands and can look

after myself but as I dont look sick there are still the same expectations

placed on me to be the house husband. As she has had to take over our business

she feels the pressure and unfairness of this but not addressed this at all

emotionally and nor will she. We have 2 kids now aged 10 and 13 living at home

as well and I became sick when my youngest was only about 14 months. So it is an

important topic this.

I used to run a successful business so still potter on the internet about

business stuff

I came across this post about people and convincing (selling) them the other day

and thought it appropriate for this topic about " trying to educate some people

about mecfs "

http://www.nickusborne.com/2012/01/copywriters-never-try-to-change-your-prospect\

s-minds/

So the outcome is for some no matter how hard you try they will never " get it " .

So understand this and avoid it with them or move on. I guess thats also why

most have probably lost our friends. I have only 1 left from my pre illness

days-but made many more who have this illness

Just an idea

Do MECFS people in their own towns and cities organise a " cafe club " type event

where you catch up once a month in an informal no agenda come if you can meet up

at different local cafes around towns or cities? (I live in a 4 million

population city so we go to different cafes each month for variety and to be

nearer to other peoples locations each time) Just an idea to meet with like

minded people and gain new friendships and info who do " get it "

I am sure most know about these links below but worth posting again for those

that don't

But I also know that the " spoon theory " concept can help some people better

understand from a non technical way about how you manage your day

I have given this to my wife and she made no comment as she usually does when I

give her things so I stop doing this and complaining now

you can download the pdf

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

there is also now an online video

http://www.butyoudontlooksick.com/xmedia-press/new-video-christine-miserandino-r\

eads-the-spoon-theory/

it is also a good general info for chronic illness website

http://www.butyoudontlooksick.com/

This is also a great resource

http://www.invisibledisabilities.org/

and a great book to help explain an invisible illness to buy from them

http://www.invisibledisabilities.org/educate/butyoulookgood/

http://www.invisibledisabilities.org/shop/idastore/

I have the first version of this book and it is great as a resource for this

explanation to help with family and firiends-It is only $ 5 US

BUT like my wife if she is not interested like her she has not and wont read it

even though I have shown her it same as the spoon theory etc!

Sometimes to others I say its just like having MS and leave it at that and if

they dont wont get it and like the business blog above you can also waste energy

trying to explain it all!

Most people though also dont really know how to handle illness and what to do or

say and thats just human nature

here are some other links that may help

http://www.cfids.org/resources/family-and-friends.asp

this site has many resources

http://www.cfidsselfhelp.org/library/self-help-cfids-and-fibromyalgia

http://www.cfidsselfhelp.org/library/topic/Family+%2526+Friends

http://www.hfme.org/informationguides.htm

http://chronicfatigue.about.com/od/forfriendsfamily/Resources_for_Friends_Family\

_of_People_with_Fibromyalgia_or_MECFS.htm

Maybe there are some tips here that will help them and or you cope with the

" doubters or problem family friends " etc better

When people dont get it it is easy to say well dont let it bother you-but it

does so it takes time to be able to walk away or ignore it or change the subject

when it happens and that takes practice patience and courage to live with this

not properly definable illness

Cheers

Australia

[Guest guest]

{Moderator: Last one since this is such a good resource...}

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory\

-written-by-christine-miserandino/

>

> I've had CFIDS for 17 years, the people in my family and friends, they " just

don't get it " and I thought I had seen on some CFS site, a informtional piece,

that one could print out and give to others, so they could understand, All I

hear when I say I have CFS, is " OH, I am chronically fatigued too " . I get so

tired of hearing that. Any suggestions ? in Oregon

>