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An Open Letter Options
Paula-C
#1 Posted : Tuesday, March 06, 2012 11:31:12 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
I read this on another forum and thought I would post it here.

Dear Everyone,

This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?

If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.

Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.

Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.

Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.

Thanks for listening.
With love
Me xxx



jeanb
#2 Posted : Tuesday, March 06, 2012 2:00:14 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,006
Location: Timperley
Wow - sums it all up, doesn't it?
xx
dorat
#3 Posted : Tuesday, March 06, 2012 3:18:11 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
Perfect!



Jane-o
#4 Posted : Tuesday, March 06, 2012 3:42:32 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 3/14/2011
Posts: 38
What a fantastic letter - you have put into words all those thoughts that I know we all have had when we are having to live with this dreadful illness - I, and I'm sure everyone else can relate to all you have talked about, whilst it made me tearful as I was reading it, it somehow made me feel that "it's not just me" and has made me me feel more positive - thank you and take care

Jane xxxx
Kathleen_C
#5 Posted : Tuesday, March 06, 2012 4:47:56 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Yes, I read this too - it`s absolutely spot on! It should be shown to anyone who says " Arthritis? My granny had that in her little finger."

misty
#6 Posted : Tuesday, March 06, 2012 4:53:17 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 74
Gosh that just sums the whole thing up, what a great letter.
Thanks for posting this.
Candy
x
bpeal1
#7 Posted : Tuesday, March 06, 2012 5:36:23 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/13/2010
Posts: 118
Location: Shrivenham, Oxfordshire
That is a brilliant letter.
Rebecca D
#8 Posted : Tuesday, March 06, 2012 7:52:09 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 242
Thank you Paula for posting this.

I am having a rotten time with R.A at the moment and reading this really helped me.

Love
Rebecca x
Blue Star
#9 Posted : Tuesday, March 06, 2012 8:01:24 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 561
Blue Star
#10 Posted : Tuesday, March 06, 2012 8:04:11 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 561
Feeling terrible at the moment and this letter sums it all up , thanks for posting it x
maggie_sm
#11 Posted : Tuesday, March 06, 2012 8:49:07 PM Quote
Rank: Newbie

Groups: Registered

Joined: 12/7/2009
Posts: 1
Paula-C wrote:
I read this on another forum and thought I would post it here.

Dear Everyone,

This letter is to help you understand my feelings as I deal with inflammatory arthritis and the changes it brings to my life.

I am scared. I don’t know what the future holds for me. Will I end up crippled? ? Will I continue to be able to get out on my own or will I increasingly have to depend on others?

If you find me being quiet and reflective, please don’t think I am upset with you. I am trying to sort out my fears.

I am angry. I sometimes have difficulty just completing simple tasks, such as opening a jar, or lifting things. If I appear angry please understand it is the disease I am angry with, not you.

Likewise, please understand the difference between “happy” and “healthy”. When you’ve got flu you probably feel miserable with it, but it goes away. My disease won’t go away and I can’t be miserable all the time, in fact I work really hard at not being miserable. So if you’re talking to me and I sound happy, it means I am happy. Not that I am suddenly “better”. I may still be tired and/or I may still be in pain.

Please understand that chronic illnesses are variable. It’s quite possible that one day I am able to walk around all over the place, while the next day it’s agony just walking across the room. Please don’t think this means I’m faking it or than I could “do it if I tried”. I also want you to know that arthritis moves around. Yesterday my neck was throbbing; today it is my feet, who knows what it will be tomorrow? If you want me to do something, ask if I can and I’ll tell you. Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

If I ask for your help with something it is not because I am being lazy but because I really need help with it. It is not my goal to be a diva and have people waiting on me hand and foot. In fact, it’s rather embarrassing for me to have to ask for help with things I’ve been able to do up until my illness. For a while I wouldn’t ask for help and it would make me feel worse later. I am learning to deal with the embarrassment rather than putting myself through more pain.

I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please don’t offer me sympathy; I don’t want your pity. But do offer me your support and understanding, which I truly appreciate.

Please don’t assume you know what is best for me. Arthritis has affected my joints, not my mind. I am capable of making my own decisions.

Most importantly of all, I still want to be part of the “gang”. Please continue to invite me to participate in activities. I’ll decide if I am capable of it. For example, you may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts so much when you exclude me. Maybe I can’t skate with everyone else but I can bring the hot chocolate and watch and laugh with my friends just as I always have. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally; believe me I will have tried very hard not to cancel.

Finally, please remember that I am the same person I was before arthritis; arthritis doesn’t change the heart and soul. I still laugh, I still cry. I still love and I still hate. I still tease and joke with my friends and enjoy being on the receiving end of the same. I am me, I am not my disease. I am probably more compassionate to others with similar aches and pains now. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, but I don’t need to be treated with kid gloves.

Thanks for listening.
With love
Me xxx




zena_mary
#12 Posted : Tuesday, March 06, 2012 10:02:17 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 1/21/2012
Posts: 388
Location: Powys
What a brilliant summing up of this disease and how many of us feel! It has beeen put so well, just the thing to show family and friends who want, so much, to know what it is all about. It is very hard to explain to people how you really feel without offending or sounding as though you are after sympathy or worse,ending up in tears because you feel so crap.
Thankyou Zena x
LynW
#13 Posted : Wednesday, March 07, 2012 9:31:11 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
This really is a very honest letter which explains with clarity all the feelings and emotiona we PASS THROUGH on the journey of rheumatoid disease. I'm just sorry that the writer refers to 'arthritis' throughout, in the reader's mind this may go back to 'My granny had that in her little finger'!

We all go through these feelings at some point and sometimes they may last for many years but there comes a point of acceptance and knowing how to live with and cope with chronic disease. It is a stage in the journey and not the end of a life. Things do get better, life changes with our experiences, It isn't always pain and inflammation (or surgery in some cases!), there are always positives to the negatives. Let your travelling partner (RA) come along for the ride (you don't have a choice!) but don't let him have his own way too often!

Stay in charge, accept your disease with positivity and learn to know it well. ThumpUp

Lyn x



My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

JulieM
#14 Posted : Wednesday, March 07, 2012 6:13:05 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/4/2009
Posts: 1,524
Location: W. Yorkshire
What a fab letter, thank you.
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
jenni_b
#15 Posted : Thursday, March 08, 2012 8:23:15 AM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 2,237
Location: nr Southampton
What a well written and helpful letter Paula

Well done xx
how to be a velvet bulldoser
LouiseMc
#16 Posted : Thursday, March 08, 2012 8:22:46 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 4/20/2010
Posts: 153
Location: Kent
Excellent letter xx
I love people who can make you smile even when you do not feel like smiling. x
Louise09
#17 Posted : Friday, March 09, 2012 11:37:05 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 10/19/2010
Posts: 88
Location: Saddleworth, UK
Wow!

I hope the writer doesn't mind that I have printed it off and attached it to the fridge so my 3 teenagers and husband see it every time they go for food!!! (its the most common place in the house) I have not passed it as my own but it is so true and to the point!

Lxxx
acefeline
#18 Posted : Friday, March 23, 2012 11:07:56 AM Quote
Rank: Member

Groups: Registered

Joined: 3/20/2012
Posts: 14
Location: Cambs
What a brilliant letter!
Sums up all the things I feel but could never find the words for.
Sue10
#19 Posted : Friday, March 23, 2012 4:54:33 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 6/18/2010
Posts: 351
Location: Herne Bay Kent
Brilliant!!

Hope you are all enjoying this lovely weather.

Have a good weekend.

Sue
x
Kathleen-7
#20 Posted : Friday, March 23, 2012 5:25:41 PM Quote
Rank: Member

Groups: Registered

Joined: 2/11/2010
Posts: 19
Location: chepstow wales
ThumpUp PAULA THANKYOU FOR LETTING ALL OF US SEE THIS LETTER I AGREE WITH EVERYTHING EVERYONE HAS COMMENTED ON REGARDING IT, IHATE THE FACT THAT THERE ARE SO MANY OF US IN THIS POSITION AND SO MANY OUT THERE WHO THINK ARTHIRITIS SO WHAT WE ALL GET IT THEY REALLY HAVENT A CLUE ThumbDown AND GOD FORBID THEY NEVER WILL BE IN THE SAME POSITION TO FIND OUT, BUT IT WOULD BE NICE IF THEY COULD READ THE LETTER AND TRY TO UNDERSTAND HOW WE FEEL . IWISH EVERYONE WELL AND MORE GOOD DAYS THAN BAD I WISH I COULD PRESS A BUTTON AND MAKE EVERYONE WELL AGAIN BUT SORRY I CAN NOT BUT I CAN KEEP YOU IN MY THOUGHTS AND TELL YOU YOU ARE NOT ALONE RollEyes
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