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Letter to people without chronic pain Expand / Collapse
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Judy6
Posted Wednesday, March 04, 2009 9:22 PM


 

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I just read your post and it brought tears to my eyes. I look normal, act normal, and people seem surprised when I get up and hobble around the room. It's so hard to understand the constant pain, when its not something you can see. I fake it, walk thru the pain and try to look as normal as possible, don't want people to worry. But boy o boy does it hurt. It is the odd day to wake up and feel strange, and then realize the oddness is the absence of pain. This board is a great place to feel "normal" Thanks for the post.
Post #4187640
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chris 2
Posted Thursday, March 05, 2009 1:45 PM


 

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You're very welcome Judy.  We're all in the same boat here and sharing the pain, is what its all about.

Chris

Friends are just angels who have forgotten how to fly

Post #4187790
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Athena22
Posted Monday, March 09, 2009 2:45 PM


 

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PERFECT!  That was so well written.  That is exactly what it is like for us with RA!  I have eperienced all you have written there.  The one that gets me is, when someone calls me and I sound happy, they say, oh! you sound good, like I must be feeling good too!  I have said to them what you wrote, that if I sounded the way I actually felt all the time, I would sound terrible, and so I choose to sound happy.  I dont want to sound like I feel.   I also think people tend not to want to come over to my house very much, and we need that more.  I have also had to cancel last minute and people have gotten mad about it. Even my own Mom has been personally hurt by me not being able to go to every family event!  She does not get it, no matter how much info I send her.  I try to educate and I sure dont expect everyone to understand... since they really dont know. But, when I do send info and explain, I do appreciate those people who really try to get it... and they care.  My mom may never get it.  Oh well.  THanks!! 

PS would it be ok if I copied this to send to people?  If not, I understand. 

Post #4188442
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chris 2
Posted Monday, March 09, 2009 8:05 PM


 

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Athena,

Of course!  Please feel free to copy and send it to whoever you like.  This letter has helped so many to understand and finally get the message.  I expect it has already passed around this country several times and there are still those who just don't get it.

May God be with you and bless you my friend.

Chris

Friends are just angels who have forgotten how to fly

Post #4188480
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Athena22
Posted Monday, March 23, 2009 3:08 PM


 

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Last Login: Monday, June 01, 2009 12:24 PM
Posts: 36, Visits: 4
thank you.

I tried to post a comment on your page but I keep getting a black screen...

hope you are having a great day!

Post #4190782
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chris 2
Posted Tuesday, March 24, 2009 12:33 AM


 

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Hi Athena,

I don't know what's wrong with profiles or site mail.  When I tried to access yours, it said, "access not allowed".  Hopefully it will get straightened out soon.

Chris

Friends are just angels who have forgotten how to fly

Post #4190862
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blueyedchyck
Posted Sunday, June 28, 2009 6:56 PM


 

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Thank You, 

And yes keep this up top!

Terry

Valentia, Ontario Canada

Post #4213360
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maria183
Posted Monday, August 10, 2009 2:47 PM


 

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Last Login: Wednesday, September 02, 2009 9:06 AM
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Hi Chris , beautiful poem that you posted here, I had to print it out to post at work for all those people that have no idea what I go through...Kudos to you....
Post #4224378
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Meridith
Posted Monday, September 21, 2009 6:41 PM


 

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Thank you for posting this Chris. This is all new to me. I turned 40 on 8-14-09 and it all went down hill from there. The pain is unreal at times. All I hear is I wish I could help you. I wish I knew what to do. My 18 year old daughter is such a trooper. I just don't know what I would have done without her. It was like waking up one day and life is so called normal then the rug is ripped out from under you. Your writing really summed it up. Come over talk to me. Help me out. At this time in my life I really do not care where to put things away. Since standing for more then 10 minutes is really hard. I am so thankful to have found this group. I felt so alone. With the pain everyday all day it can be pretty hard to deal with. I just wanted to say thank you. I can relate with it all.
Post #4235820
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Erica Munro
Posted Friday, October 02, 2009 3:08 AM


 

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Wow I have been looking all day for a way to explain my "days" to my family and friends as most of the time they make me feel like I am faking this or it is all in my head.  Today my sister told me I can't blame everything on RA because I told her I wasn't feeling well.  I became upset off and hurt all at the same time.  How can she think I am making this up?  So I borrowed your letter and posted a note to all my friends and family on Facebook to try and help them understand what the life of an RA person is like.  Thank you so much!
Post #4239996
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Danielle Scholbrock
Posted Tuesday, October 13, 2009 3:14 AM


 

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I LOVE the spoon theory! Use it all the time!
Post #4243577
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MaryFran
Posted Thursday, October 15, 2009 4:25 PM


 

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Chris - I just read this letter and wish I had had it last year when my RA and related problems started! I remember my sister telling me I just needed to get up and walk around the neighborhood - I could barely walk through my house! I remember how angry she was when I said I could not go shopping or something with her because I felt so bad. I just did not have the words to explain to her what I was going through. Just like the letter says, I sometimes just broke down and cried trying to get her to understand. Things are much better for me this year but I still asked her to read the letter so that she will get it when I go through future flares and bad times with my RA - which is just to be expected as this awful disease works its way through our bodies. I will keep the letter and pull it out when necessary. Thanks so much for posting it!!!!

Mary H.

Mary H.



Plaquenil, Medrol, soon to be Orencia, Folic Acid, Vit. D, B12, Calcium, + others unrelated to RA
Post #4245280
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Bodak
Posted Monday, October 26, 2009 8:30 PM


 

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I have found that getting some of your closest friends to understand can be very difficult.
I have a wedding to shoot in a couple of weeks of which I have my friend to assist.
He has agreed, which is good, but, he wants me to stay over night at his place after the wedding.
I have told him that I will be very tired and wish to return home to my cave where I can try and wind down.

As quick as a flash he comes back and tells me that I am talking myself into being tired.
I think after three years of this disease I might know how I will be.

I will be tired and in no mood to have to concentrate on what others might be saying let alone have a few beers.
In one ear and out the other...

I've also tried my hand at explaining to people what it can be like with this disease.

----------------------------------------
Peace be with you always.
Stephen

Severe RA since October 06
Web Site - Photography
Post #4250064
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Laura Loop
Posted Monday, November 09, 2009 11:41 PM


 

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Last Login: Monday, November 09, 2009 11:31 PM
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Thank you for posting this, Chris. I too find all too often that people don't understand the nature of chronic pain, how you learn to live with it, to disguise your demeanor so as not to disturb those around you, and how every day (sometimes every moment) can be dramatically different. And the ever-annoying suggestions from well-intentioned but clueless people about some simple food, exercise or OTC supplement that will magically take it all away because it worked for their second cousin or they read about it in a vegan recipe book. The worst part is the fatigue, and how pepole think you can actually "manage" it.... like a checking account. Little do they know that it manages you.
I hope you are having a good day. I hope you have the energy to do what you need to do today.
--Laura
RA for 10 years.
Post #4259917
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