Arthritis Foundation Forum / RA Connect / Rheumatoid Arthritis - (RA Connect) / Letter to people without chronic pain / Latest Posts

RE: Letter to people without chronic pain

Laura Loop — Mon, 09 Nov 2009 23:41:13 GMT

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.--LauraRA for 10 years.

RE: Letter to people without chronic pain

Bodak — Mon, 26 Oct 2009 20:30:54 GMT

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...[url=http://stephenissell.wordpress.com/2009/03/22/rheumatoid-autoimmune-disease-rad/]I've also tried my hand at explaining to people what it can be like with this disease.[/url]

RE: Letter to people without chronic pain

MaryFran — Thu, 15 Oct 2009 16:25:21 GMT

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.

RE: Letter to people without chronic pain

Danielle Scholbrock — Tue, 13 Oct 2009 03:14:11 GMT

I LOVE the spoon theory! Use it all the time!

RE: Letter to people without chronic pain

Erica Munro — Fri, 02 Oct 2009 03:08:39 GMT

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!:)

RE: Letter to people without chronic pain

Meridith — Mon, 21 Sep 2009 18:41:04 GMT

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.

RE: Letter to people without chronic pain

maria183 — Mon, 10 Aug 2009 14:47:34 GMT

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....:)

RE: Letter to people without chronic pain

blueyedchyck — Sun, 28 Jun 2009 18:56:14 GMT

Thank You,

And yes keep this up top!

Terry

Valentia, Ontario Canada

RE: Letter to people without chronic pain

chris 2 — Tue, 24 Mar 2009 00:33:40 GMT

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

RE: Letter to people without chronic pain

Athena22 — Mon, 23 Mar 2009 15:08:42 GMT

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!

RE: Letter to people without chronic pain

chris 2 — Mon, 09 Mar 2009 20:05:58 GMT

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

RE: Letter to people without chronic pain

Athena22 — Mon, 09 Mar 2009 14:45:51 GMT

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.

RE: Letter to people without chronic pain

chris 2 — Thu, 05 Mar 2009 13:45:08 GMT

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

Chris

RE: Letter to people without chronic pain

Judy6 — Wed, 04 Mar 2009 21:22:03 GMT

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.

RE: Letter to people without chronic pain

John Bowden — Wed, 04 Feb 2009 23:54:38 GMT

Thank you so much for posting that. I've had a pretty easy time with getting space and understanding from everyone close to me, but I do encounter many people who don't understand what the big deal is. Both the letter and the spoons story have really helped me to explain just how I feel most of the time. I never had the words to explain it well myself.

RE: Letter to people without chronic pain

sallie garcia — Tue, 27 Jan 2009 19:49:46 GMT

this letter felt like you were in my head... im sitting here at work not expecting this to hit me the way it did.. thank-you a million times..all icould do is cry when i read it because ive fought with trying to be normal (getting up hours earlier just so no one will know what i have) and when im not i feel so guilty... when i feel depressed, back out of engagments, or even cant do for myself... i felt like theres no way this is normal for my condition there is something wrong with ''me me'' besides this condition.. the fighting feeling i hold on to so tightly sometimes escapes and i just feel myself falling... like yah you know what im tired of trying my hardest to wake up and go to work only to get there and hear countless comments on how my hair may look or that i look tired... but wow thank-you i am normal whatever that word really means...

RE: Letter to people without chronic pain

Kimberly Thomas — Mon, 26 Jan 2009 20:46:59 GMT

Amen to that!!! Today is not one of my better days, actually the last few days haven't been and I feel very lethargic and tired. I had plans couldn't make an event. Most of my friends understand, but other have no idea about what it means to deal with infusion treatments or one day you feel great and the next you can't even move. I know your pain. Thank for your post and the explanation to others.:D

RE: Letter to people without chronic pain

chris 2 — Mon, 26 Jan 2009 11:31:02 GMT

I'm glad you agree Lana. That letter has meant so much to so many and if I could send it all around the world, I think a lot of folks who just don't get it might just have an attitude adjustment!

All the best,

Chris

RE: Letter to people without chronic pain

Lana K — Sun, 25 Jan 2009 21:23:52 GMT

WOW! Does that ever hit home! I wish everyone out there that does not have chronic pain could read that and understand it. It would sure make things better for those of us with chronic pain.

Lana K

RE: Letter to people without chronic pain

chris 2 — Sun, 25 Jan 2009 02:00:31 GMT

Hi Lyzette,

I can't tell you how sorry I am for your pain. It really is so very hard to make others understand what we go through all day every day.

This letter can help if you just print it out or have others read it. The first time I read it, I copied it, pasted to an email and sent it to everyone in my address book. I was so surprised at the replies - "I didn't know, Chris. I'm sorry." or "I thought I had pain until I read this." even my Grand Daughter who I see almost everyday and is very observant, told me, "Grandmama I had no idea! Why didn't you tell me this before?"

There are so many people love us and want to help but they just can't know what its like. One of my nephews told me to "put some WD40 on it"! Another nephew said, "Oh rheumatoid arthritis is the disease of choice now days. Everybody has it"!

I wish you the very best and sincerely hope you'll find a good rheumy that you can trust and talk to and that your mobility and fatigue improve every day.

Please do post often and let us all know what progress you're making or, just to vent and get your feelings out in the open. This is one place where you'll be understood.

Hugs and blessings to you.

Chris

RE: Letter to people without chronic pain

Lyzette Salazar — Sat, 24 Jan 2009 23:36:41 GMT

OMG...this so made me cry. I wish I could tell this to so many people. It is all so true. I just found this site last night. I can't believe I haven't found it a year ago when I was diagnosed with RA. I can't say how bad it has truly gotten lately and I truly hate my Rheumy doc that I am in search for a new one. He is the most rude, obnoxious, uncaring, "God complexed" idiot I have ever met and he doesn't listen to my pain when I go to my monthly appointments. I can barely function right now, can't work, can't barely dress myself. I'm on all these meds and still have pain 24 hours a day. I try to hide it and smile around my husband and child, but they still know I am hurting. No one truly understands the type of pain and fatigue that come along with this. I wish I could hand this letter to everyone. Thank you so much for sharing this.

RE: Letter to people without chronic pain

Sharon H — Sun, 04 Jan 2009 14:12:56 GMT

Thank you Chris,

Today is just one of those days where the depression is really hitting me on top of everything else. This reminds me I'm not alone in the process. thanks again sharon

RE: Letter to people without chronic pain

Bethdep — Tue, 30 Dec 2008 15:26:54 GMT

chris this is great to know that you have someone that knows what chronic pain is all about there is days i have to make myself be happy it is hard to live with thhese conditions

RE: Letter to people without chronic pain

Christina231 — Sat, 13 Dec 2008 22:50:48 GMT

It's like you read my mind! Thanks.

RE: Letter to people without chronic pain

sandy ryan — Tue, 09 Dec 2008 01:36:48 GMT

I read your e-mail in reference to your meds, you should not skip your meds it can worsen your condition,as far as your meds try contacting the pharmacutical companies they sometimes give you free meds for 6-months to 1-year.

RE: Letter to people without chronic pain

Ruth — Mon, 01 Dec 2008 16:21:41 GMT

What a great letter. I always hear...." but it's not that far to walk" or "you can carry it, it's not that heavy." People just don't understand. Thanks for sharing that letter.

RE: Letter to people without chronic pain

Ed Male — Mon, 01 Dec 2008 04:58:34 GMT

I'm new here and just wanted to say thank you.

RE: Letter to people without chronic pain

Laurie Lochner — Sun, 23 Nov 2008 14:47:54 GMT

Hello all, I am new here and newly diognosed. I really love that letter and it made me cry. It is so good to read something that I could've written word for word myself. I makes me feel less alone. I have a great family and a lot of support, but they really don't understand. I teach kindegarten and used to have a ton of energy, but not it is really a struggle. I usually hide my pain pretty well, except for when I was first diognosed and in a lot of pain to the point of having trouble walking (I still went into work for half-days and came home barely able to walk through the door- I didn't want to leave my kindergarteners abandoned at he beginning of the year).

Once I started on MTX and Enbrel, things have gotten better, but I am no where near where I was before my diognosis and peope just don't get that. I constantly get the comment at work "wow you look so much better and are getting around better". I know that it is better, but they have no idea what it takes for me to get going in the morning and give all the energy in my body all day long and then crash when I get home (my poor family, I don't have much left after work). I have felt badly about being anoyed at people for their comments, I know the are trying to be supportive and kind, but it has bothered me so much when they say how "well" I look I scream inside my head "if you only knew what it takes for me to come into work on some days!". I don't wear my pain on my sleeve and they don't see how much I struggle after I take the MTX and give myself the Enbrel injection (I hate shots and still am not used to it after two and a half months).

I am thankful that I found this board and read that letter!

Laurie

RE: Letter to people without chronic pain

girlfeia — Tue, 18 Nov 2008 08:01:56 GMT

to chris 2 ,letters to people without cronic pain .xlent,superb :P

RE: Letter to people without chronic pain

Mandy Julian — Mon, 17 Nov 2008 16:51:33 GMT

couldn't have said it better myself!

Mandy -- diagnosed w/ JRA at 5yrs, went into remission after a few months. / diagnosed later in early 20's. Much more aggressive and "angry" condition 2nd time around. 26 yrs old now.

RE: Letter to people without chronic pain

t"RA"cy — Sat, 15 Nov 2008 09:19:57 GMT

Dear Chris,

Just to let you know ...Paul who wrote those last comments ..is my husband ! He joined this site because he comes on here every day and reads my blogs and he actually goes through and reads others too ...I didnt ask him to ...he just knew I was writing in here ,my blogs and I had told him how happy I was to have all of you in my life.. he has seen the change in me since I have been writing blogs and talking about all the beautiful people in here and all they go through too..so he took the time and started reading ...he has been so touched and moved by all of this and his eyes have been fully opened to our situations...He has always been there for me but he just wasnt fully aware of all we go through ...and the best part is that he wants to be fully aware and then try even harder to help me through...I have seen a big change in him too since he started reading all these blogs and comments...He truely is my hero ! I truely hope that others will also share with there loved ones some of these posts , comments ,topics and blogs and especially this letter you posted. I really believe it can help our loved ones understand better also ! Thanks so much for your kind and loving words Chris

I keep you ,and all ,in my prayers !

Blessings ,Tracy

RE: Letter to people without chronic pain

PAUL SZULIST — Fri, 14 Nov 2008 15:11:07 GMT

CHRIS,

THANK YOU SO MUCH FOR SHARING THIS. MY WIFE HAS RA AND JUST UNTIL RECENTLY I HAVE BEEN UNABLE TO BECOME EVEN CLOSE TO UNDERSTANDING THE PAIN AND EXHAUSTION THAT SHE GOES THROUGH DAILY. I WILL PROBABLY NEVER FULLY UNDERSTAND BUT THE MORE I HEAR ABOUT IT AND ITS EFFECTS THE MORE I CAN UNDERSTAND WHAT MY WIFES NEEDS ARE. I SOMETIMES FEEL THAT I HAVE BEEN SO SELFISH IN NOT UNDERSTANDING WHAT THIS DISEASE DOES. IT BECOMES SO EASY TO JUST IGNORE IT BUT IT IS SO EVIDENT THAT I NEED TO UNDERSTAND IT TO THE BEST OF MY ABILITY SO THAT I CAN HELP MY WIFE WHOM I LOVE SO DEARLY DEAL WITH HER DISEASE. THANK YOU AGAIN FOR SHARING AND GOD BLESS YOU.

PAUL

RE: Letter to people without chronic pain

t"RA"cy — Fri, 14 Nov 2008 10:13:30 GMT

Thank you so much for this letter... you may not believe this ...but I was just thinking It's so great to have you all who totally get it ... totally understand and sympathize ...and it really really helps me through it all ...but I still get so frustrated that others who dont experience what we all do ... still dont get it ! And I was thinking how can we make them understand better ? I sort of selfishly want them and need them to care about me the way you all do ... And literally 3 seconds later I clicked on this topic because I saw that letter ....wow...I have goosebumps ! And I will definately be sharing it with those who I feel need to read it !

God Bless you for sharing this with us all !

Tracy

RE: Letter to people without chronic pain

carol11 — Thu, 13 Nov 2008 14:15:12 GMT

Thank you so much for the letter! You are saying what I think all the time! I am so glad I read it! Carol11

RE: Letter to people without chronic pain

kevin talbot — Mon, 10 Nov 2008 15:06:26 GMT

Chris, you letter made me feel not alone,

thanks,
Kevin

RE: Letter to people without chronic pain

kevin talbot — Mon, 10 Nov 2008 15:04:50 GMT

i understand completely, god bless

RE: Letter to people without chronic pain

Jorgelina — Sat, 01 Nov 2008 13:08:25 GMT

Hello Chris :)
Thank you very much for your welcome. And I´ll do what you said about my post and will introduce myself again where everyone else can see it.

And I want to say once more the letter is great, I already translated it for my parents... Hope they get the message...

Thank you for your kind words, I already feel like I´m home here :)
I´m looking forward to get to know all of you...

RE: Letter to people without chronic pain

Jorgelina — Fri, 31 Oct 2008 18:40:35 GMT

Hello everyone, I´m new here... My name is Jorgelina, I´m 27 and I´m from Buenos Aires, Argentina.
I was diagnosed RA 1 year and a month ago. First months were terrible, sometimes I woke up in the morning screaming for the pain and crying because I could barely move... At first my doctor gave me just a medication to ease the pain, but I never started a proper treatment because medications and all things related to this disease are really expensive here. I´m waiting to get my medical insurance so I could begin my treatment. Currently I´m not taking any pills, basically ´cause I got tired of it all... So, of course, my pains are back, some days I can do just fine and some other days they´re a bit more intense and I have difficulty to get up, raise my arms, open the car´s door, etc. I live with my parents and my 5-year-old daughter Sarah (I´m a single mom) so I still have to do lots of things even if I´m in pain, and I try not to complain so much, maybe I tell my parents that my arms, my hands, my knees, or whatever hurts but I keep doing my activities.

I just read this letter and I thought it was perfect to show my parents and all my family and friends what I feel sometimes, because I know that they know I´m sick but sometimes it feels like they got used to it and take it as something that is there but don´t really understand the pain I go through. So I want to thank you for posting this letter here and I will translate it so I can read it to all the people who loves me and I love...

Thank you very much, and I´m really happy I found this forum cause I know a couple of people who has RA as me but I never get a chance to talk about my feelings about it and I know here I will find all the understanding I was looking for. :)

RE: Letter to people without chronic pain

ShannonJewell — Sun, 26 Oct 2008 11:54:55 GMT

That was so beautifully worded. You hit the nail on the head. I should print that out and pass it out as I meet with people both family and friends. They just dont understand what it is like. They hear Arthitis and they think oh ok when it rains you will have some pain and maybe when it is cold but they dont understand how it effects the day to day activites. When I say I am not currently working trying to get this pain under control and being os tired and all they think i am just being lazy and trying to get out of work. That is so far from the truth. If only they knew how I wish I didnt have this - I wish I could go back to work and live the life I had before. They just dont understand how much this disease takes away from you. Thanks for writing this letter.

RE: Letter to people without chronic pain

Kimberly Not Specified — Thu, 23 Oct 2008 21:19:48 GMT

Thank you so much Chris2. This is exactly what we all needed. I have just recently discussed this issue with my sister and brother-in-law. In the beginning they didn't GET IT at all, but lately, I think they do. I too will pass this along to all those that DON'TGET IT.

I am in the process of recovering from a Staph infection and have been taken off all of my RA and AS meds., so I am in more constant severe pain than I was before It has been 8 weeks since my surgery and people are starting to forget that I was sick, it is now old news. What they don't realize is that I am still very sick and will be for a long time. It is actually worse at this point in my life.

suffering from RA, Ankylosing Spondylitis, Hypothyroidism and Spinal Stenois. 36 yrs. old with a 8 yr. old and a 12 yr. old.

Lots of Love and Prayers for all of us,

RA Mom (Kim)