Letter to people without chronic pain

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Letter to people without chronic pain

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chris 2

Posted Monday, September 22, 2008 11:29 PM

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LETTER TO PEOPLE WITHOUT CHRONIC PAIN

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those who think they know, many are acutally misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me....

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me--stuck inside this body. I still worry about school, family, my friends, and most of the time, I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "but you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph sustituting, "sitting", "walking", "thinking", "concentrating", "being social" and so on....it applies to everything. Thats what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or "do seomthing to get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain that you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means I have to do it right now - it can't be put off or forgetten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is a worldwide network (both on and off the internet) between people with chronic pain. If something worked, we would know. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all of the time,I know that I am doing my best to cope with this and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways, I depend on you - people who are not sick. I need you to visit me when I am too sick to go out...Sometimes I need your help with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I asked a lot from you and I do thank you for listening, it really does mean a lot.

There was no author listed.

Friends are just angels who have forgotten how to fly

Post #4160356

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Wendy

Posted Tuesday, September 23, 2008 9:47 AM

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Thank you Chris. That letter really hits home!

wendy

Post #4160381

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Bob_S

Posted Wednesday, September 24, 2008 6:55 AM

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Chris,

Thanks so much for posting this and keeping it at the top of the list. I think this morning, reading it has given me the strength to face another day. Knowing that others are sharing the same trials and tribulations of this disease keeps this from being a very lonely experience. Thank you.

Bob

___________________________________________

"You're as happy as you make your mind up to be." - Abraham Lincoln

Post #4160555

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Abby04

Posted Wednesday, September 24, 2008 12:24 PM

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I LOVE this. I think it should very much be pinned to the top!

Abby

Every oak tree started out as a couple of nuts who stood their ground.

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Daniel bless

Posted Saturday, September 27, 2008 8:07 PM

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Thank you Chris for taking the time to write this. Iam sending this to people i love. There is alot of people i know that should read this.

Dan Ross

about 9 years chronic pain

Post #4161240

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CallMeSteph

Posted Tuesday, September 30, 2008 4:59 PM

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Thank you so much for passing this on. It is so hard to explain to people what you're going through and how you feel. I have taken this and passed it on to let people know how I feel.

22, diagnosed 12/07, Plaquenil, Methotrexate, Folic Acid, Leucovorin Calcium, Orencia, Prednisone, Lexapro

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CallMeSteph

Posted Wednesday, October 01, 2008 11:17 AM

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Since I passed this letter on to my friends and family, I have gotten several interesting responses. I have one friend who said replace the word pain with fatigue and that describes her. I had another who said she "didn't even know that there was something like that," referring to chronic pain. She was very curious about it and wanted to learn more. This has given me the ability to spread awareness about our condition and it feels great.

Stephanie

22, diagnosed 12/07, Plaquenil, Methotrexate, Folic Acid, Leucovorin Calcium, Orencia, Prednisone, Lexapro

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Cynthia280

Posted Friday, October 03, 2008 11:33 AM

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That letter is like a poem of our lives.Thank you for usuing your energy to write it.

Cindy

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adoRAble_me

Posted Saturday, October 04, 2008 1:02 AM

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Wow Chris - thanks for posting this. I'm new to this forum but have had RA for about 5 years now even though I wasn't diagnosed till just over 2 years ago. My rheumy thinks I sustained a lot of damage to my feet, ankles and wrists in those 3 years so I too am in constant pain. As you all know its really difficult to get through a day while trying to maintain some semblance of normalcy despite the chronic pain, fatigue, blues, etc. in addition to putting up with other people's ignorance of what you're going through. This really validated so much of what I feel and I plan on sharing it with my family, friends and co-workers. Just finding this forum has also helped me as I've been reading all your posts. Everyone I've "met" so far has really helped me feel less alone. Thanks new friends and God bless you all. Kiss

Faithless is he that says farewell when the road darkens. JRR Tolkien

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Grandpavan

Posted Saturday, October 04, 2008 3:23 PM

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http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

The Spoon Theory is another story that helps to explain the problems with a chronic illness. I hope it helps. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter. Doing well on Methotrexate and Remicade.

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cherrywinkleberry

Posted Wednesday, October 08, 2008 10:20 PM

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Wow! I was diagnosed in May 2007 at 22 yrs old and have dealt with this issue TONS already! Thanks so much for posting this - it expresses perfectly everything I feel!

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Stephanie Schmid

Posted Tuesday, October 14, 2008 11:23 PM

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I *love* this!

I have to say that since starting Enbrel, I'm pretty darn "normal" about 98% of the time. My job involves a lot of manual labor (furniture moving, instrument moving, etc.) that I'm able to do without many problems. BUT....I do have off days and it's always interesting to see how the people around me respond. I can usually "fake it" in front of my kids better than I can other adults, and it seems like there's always a new cure they want to try to give me. I know their hearts are in the right place, but it drives me bonkers. When people ask me how I'm feeling I'm usually honest, but just because I say I feel rotten doesn't mean I'm asking for suggestions on how to feel better. I've been doing this for 18+ years, so it's nothing new. I think that I've given up trying to make people get it and instead just try to explain rationally and simply, like I'm talking to a child....works most of the time Smile

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jennbradley03

Posted Wednesday, October 15, 2008 7:02 PM

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this hits home for me as a person who is young and has fibro and ra.. this letter is so true if i was still working i would put this up .. i am going to have my mom read it too and everyone i know... i hate this cold weather in califonia ,, i am hurting so bad. and i have sweatshirt one socks blanket, long pants... thanks agin chris 2 Wink

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TanyaM

Posted Tuesday, October 21, 2008 8:29 PM

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I sent this to everyone I knew. My sister liked it, she has RA as well.

Tanya

RA since Dec 2003, on Enbrel, Arava, Folic Acid and B12 shots

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Kimberly Not Specified

Posted Thursday, October 23, 2008 9:19 PM

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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)

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ShannonJewell

Posted Sunday, October 26, 2008 11:54 AM

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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.

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Jorgelina

Posted Friday, October 31, 2008 6:40 PM

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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. Smile

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Jorgelina

Posted Saturday, November 01, 2008 1:08 PM

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Hello Chris Smile

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 Smile

I´m looking forward to get to know all of you...

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kevin talbot

Posted Monday, November 10, 2008 3:04 PM