Don't Assume

[kimcanada]

Don't Assume

Don't assume that because I look well that I feel well. Looks can be very deceiving. Many days I look great but feel terrible.

Don't say, "I know how you feel." No one knows how anyone else feels. We all have varying thresholds of pain, and pain cannot be measured.

Don't tell me, "It could be worse." I don't need to be reminded.

Don't decide what I am capable of doing. Allow me to make those decisions. There may be times I'm wrong, but I'll know soon enough.

Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.

Don't ask me how I feel unless you really want to know. You may hear a lot more than you are prepared to listen to.

Don't assume because I did a certain activity yesterday that I can do it today.

Do realize I am angry and frustrated with the disease, not with you.

Do let me know you are available to help me when I ask.

Do offer me lots of encouragement.

Do understand why I cancel plans at the last minute. I never know from one day to the next how I will feel.

*Written by a friend who has MS

[MyssAnne]

I like that.

I have an analogy I tell people. I read about it somewhere and adopted it so people could understand what I go through.

I tell them I have so many spoons. Each spoon equals an activity. Once that spoon (activity) is used, I can't replace it. Some days
I have a lot more spoons than other days. I just never know.

They seem to understand that. I really like your post. I'm going to send it to some friends of mine.

[KICKSTART]

Every word of that is so true, i just wish i could show it to everyone i know! Especially the ones that 'Assume' !!!!

[mmmmdeedee]

You got it right on the button sister. Even though I'm post transplant, I still have those days when things are tough. I went home the other day, not feeling well, and a co-worker says, "Well, you sure fake it real well." I can't believe he said that.

Anyway, my mother had MS also and she was the best at faking it. You know, old Japanese mother. Tough person - she took  it all, with seven kids.

Tell your friend she did a fantastic job of writing up that list!

[paris]

Great post,Kim. I am passing it on to friends and family----even those who think they "get it".

[Sunny]

You summed it up very aptly. I just wish I felt comfortable enough to send it to people I know. Aside from a precious handful of people who know me so well they don't need to be reminded, the rest would rather ignore the issue. If I look good, I must be going good.

[kimcanada]

Well I didn't have enough guts to send it to people, but I did have enough guts to put it in my quotes in facebook, so if you see my profile you see the list.  When my friend posted it I asked her if I could share it with others, she did a fine job of summing up what we all feel like on a daily bases

[KT0930]

Your friend did a great job with that, Kim! Excellent post. 

[Mimi]

I had read this before and it superbly sums up how anyone with a chronic illnesss feels.  Thanks for posting it.

Love, Mimi

[Chicken Little]

I've had many of my friends and family read the but you don't look sick website and the spoons theory.  http://www.butyoudontlooksick.com/the_spoon_theory/ 

What I always find surprising is how unaware some of my medical providers are when it comes to equating appearance and health.  I sometimes get the feeling that because I don't walk in there looking like something the cat dragged in, there is less credence given to my issues.  

[KICKSTART]

He he as i mentioned in an earlier post , i was at the clinic yesterday and greeted by the staff with ..ooh you are looking well , you even have make up on . Just because im ill ,doesnt im afraid make me stop going out without my 'face' on .. Maybe i should go with no makeup on and hair not combed next time , just to 'look' ill !!!

[Cincygrandma]

Wonderful message, Kim, which I am passing on to my family and friends.  It is so right on!  While I'm the only one of my family and friends with ESRD, many of them suffer from various other diseases, such as coronary, RA, thyroid, cancer, etc., so this is a message I needed to hear as well.  Thanks!

[st789]

 

[The Wife]

Great message Kim.  I often tell people something that's on the list in regards to my spouse.  I tell ya, sometimes I just shake my head at some of the comments that come from people in regards to his health.  Perhaps, I should go to the 'stupid things people have said thread'.  There's a lot here that can also apply's to caregivers and family members.

[BobT1939]

 

[mmmmdeedee]

I've had many of my friends and family read the but you don't look sick website and the spoons theory.  http://www.butyoudontlooksick.com/the_spoon_theory/ 

What I always find surprising is how unaware some of my medical providers are when it comes to equating appearance and health.  I sometimes get the feeling that because I don't walk in there looking like something the cat dragged in, there is less credence given to my issues.  

I had never read about the Spoon Theory but it was a great one. And it seems to fit most people in any kind of pain. Thanks for that link Chicken Little.

[Romona]

 

[Slywalker]

Kim - what a great post.  I'm tempted to print it and hand it out to my friends and around the office where I work.   

Sandyb