Letter to People Without Chronic Pain

[Wittesea]

Thought I would add this valuable resource to our new forum. For those who haven't seen this before, the author is unknown, but it has helped so many people to be able to explain chronic pain to our loved ones.


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 that think they know, many are actually 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, my 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 everyday. 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 substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's 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 some things 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 than 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 that I do have to do it right now - it can't be put off or forgotten 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 worldwide networking (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 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 you help me 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.

------------------

TIPS FOR DEALING WITH PEOPLE IN PAIN

People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

[Wittesea]

Another great tool for explaining pain and limitations to others is the Spoon Theory.

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

[LindaM]

Thanks for posting this here, I know it has been a big help to me through the yrs..
Linda

[Curious]

i copied this and sent it to my hubby. no matter how i have tried to explain, he hasn't understood. i hope this will get through to him.

thanks for posting this wittesea. it was even a wake up call to myself. i have stayed away from posting here. guess i thought if i posted here, then i would have to admit my pain. but i'm not allowed. kwim? :(

[Idealist]

Thanks Wittesea! I've seen this letter before, but I still like to read it once in a while, just as a reminder to myself.

Hey, Curious! :) It's yer old pal Auto. I just found this place, and decided to give myself a new name here. Hope all is well with the monkeys...

[JD]

Thanks for this. JD

[Spirit Moves]

I never saw this letter before.... thank you Wittesea for posting it!

[davidst]

its been a while since i have seen this letter , not 100 percent sure if i am welcome here but here i am none the less david i used to be on the old forum but disapaered biger story than tat but none the less thanks i have saved the letter to give to my gf who also suffers chronic illness

[Wittesea]

Hi davidst :) Welcome to the forums :)

Of course you are welcome here. Everyone is welcome here.

I'm glad you found us, and I'm glad the letter is helpful for you.

Take care,
Liz

[snoozie]

Hi davidst, all are welcome here. Please stick around and let us all get to know you...Sue

[davidst]

i think i will i miss the support of this place thhank you all very much
dave

[sallyb]

This was in the form of a letter when I used it about 2 years ago. My mother seemed to think I was lying, making too much over an ache of two. My children also thought that. Finally, on this (old) forum, somebody gave this letter to me to use. I sent it to my mother, letting her know that somebody else with chronic pain wrote it. In the beginning, it was like a miracle, but I was afraid it was too good to be true. Eventually, it was. But, now she (and they) believe me. I have taken my mom with me to the doctors, and have shown her MRI's, etc. She is 78 years of age. She lost my only other sibling to cancer at 46 years of age. Now, she is almost too attentive...afraid that she will loose me too. My grandfather had a very similar problem at T8/9 (with spinal cord compression. I understood (or thought I did) that his ribcage collapsed on his heart. Anybody ever heard of that? Anyway, I was afraid of being cut down if I sent her the letter...but, I sent it anyway. I think it is a good tool to help your family understand what you are going through. But, involving them is about as good.

sally

[catch_1965]

hello; I have never been involved in this talk communities before. But after reading your letter I had to reply. i have been dealing with chronic pain, depression and bipolar for many years. And it seams that one illness can sometimes affect the other or even all at once. When I read your letter it was like it came right out of my head. I have never really been able to explain or write my thoughts down. so i just wanted to thank you for doing it for me.
thanks and good luck catch

[Jo*mar]

Hello catch,
I'll copy your post to a new thread so members can say "hi."
this link will take you to the Chronic Pain main forum page-
http://neurotalk.psychcentral.com/forum10.html

we also have many other forums you might like to visit-
Main index page -
http://neurotalk.psychcentral.com/

[Peter B]

Thought I would add this valuable resource to our new forum. For those who haven't seen this before, the author is unknown, but it has helped so many people to be able to explain chronic pain to our loved ones.


Hi. In fact the author is not unknown. It was written by a friend of my daughter when she was suffering really bad chronic pain from M.E. (Myalgic Encephalomyelitis).
Just try to imagine what it would have cost her to write it. Unbelievable.

[Curious]

Hi. In fact the author is not unknown. It was written by a friend of my daughter when she was suffering really bad chronic pain from M.E. (Myalgic Encephalomyelitis).
Just try to imagine what it would have cost her to write it. Unbelievable.

peter, i don't doubt you, but this has been on this and different forums for over 10 years. do you have where she first published it?

[Peter B]

peter, i don't doubt you, but this has been on this and different forums for over 10 years. do you have where she first published it?
Hi Curious, it was written by Bek Oberin in the early days of the Internet. She was a keen blogger and had (may still have) her own web site.
Here's a link that might satisfy your curiosity.
http://209.85.141.104/search?q=cache:piJ_SnjywuEJ:www.merlinean.com/tinyd4%2Bindex.id%2B3.htm+An+Open+Letter+To+Those+ Without+CFIDS&hl=en&ct=clnk&cd=3&gl=au
The article was originally titled,"An Open Letter To Those Without CFS."
It seems to have been hijacked a lot since then, so you will see slightly different versions around.
CFS was an early name for what is now more accurately known as M.E.
My daughter has had it severely for 16 years or so, and in the early days was in contact with Bek.
Incidentally, my daughter just informed me that Bek has changed her name to Ricky Buchanan.

[fb123]

I finally found someone that appears to know what chronic pain is, and how others around us react, they just don't realize how much it can hurt. I have chronic PN pain in my feet and work 8-10 hrs a day on my feet. Many don't understand why I have to get off them so much, nut your post hit the nail on the head. thank you, Frank

[ol'cs]

I have CP along with advancing parkinson's disease. I want so desparately to be "well" and "understood", but instead have lost my job , my friends, and soon my wife. All but one of my 3 kids don't "hate and despise me". And in exchange for this, I still love all of them deeply, give them all my money, and hope that they will be blessed with a chronic disease free life, so that they may NEVER have to suffer in isolation and silence.

[DM]

Ok, am I the only one who has never seen that particular explanation before?? Thank you for bringing it back up, so people like me could see it. WOW, it totally hits the nail on the head. I find it so hard and exhausting trying to explain my actions or lack of, over and over.

I wish I could print it out and tape it to my back.

[Morc]

I just joined the community, and this is the first time I have seen the letter. It expresses much of what I would like to say. Thanks for posting it, it is a tool I will use.

[lee53]

Thought I would add this valuable resource to our new forum. For those who haven't seen this before, the author is unknown, but it has helped so many people to be able to explain chronic pain to our loved ones.


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 that think they know, many are actually 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, my 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 everyday. 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 substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's 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 some things 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 than 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 that I do have to do it right now - it can't be put off or forgotten 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 worldwide networking (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 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 you help me 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.

------------------

TIPS FOR DEALING WITH PEOPLE IN PAIN

People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

Thanks for this letter I am saving it so I can use it next time to explain what chronic pain is about. LeeAnn

[jconner]

OH MY YOUVE HIT THE NAIL ON THE HEAD! youve said me so well. may I print this and send it to those who judge me? I have Hep C and severe rheumatoid arthritis. im 45 next week,goodlookin and smart( former xray tech) now my days are spent woorrying how to feed myself when im down, ill go awhile without eating, paying the bills (divorced after 22 years of abuse no alimony or support, he wont pay) yeah im depressed. old freinds I run into when im occasionally have agood day and go shopping (thrift always) seem to treat me different. even my family are alienated. the need for pain meds they call me a drug addict, although I never look or act under the influence. this forum is nice.

[kronikpainz]

Thank you very much . I have never seen such a letter to explain what it is like to live with chronic pain. I would like to send a copy to all my family and even some of the doctors or specialists aside pain management a copy as well.

[Melina 82]

Hi,
I am grateful for this letter you have written because it explains everything i go through all the time people just dont understand how hard it is living with chronic pain i have bilateral trigeminal neuralgia and occiptical neauralgia, hopefully this will help people understand how we feel i too hate being told i hope you feel better soon i am never going to get better i have permanent nerve damage!

thanks again
Mel :grouphug::grouphug::grouphug::grouphug::D

[billie]

Many thanks for this wonderful letter! I know so many people who need to read it ~ like my family and my very kindly neighbor who invites me to "get out of the house" for visits to DQ or senior citizens dances. He doesn't understand that if I could be out of the house, I would be.

[Stevemartin]

Thank you very . This letter explains what it is like to live with chronic pain.

[Techman-10]

Wittesea Thank you so much for posting this letter, I have never seen it before but it does hit the nail right on the head! I hope that I can make some of the people I know understand a little better of what I am feeling at times!
Thank you once again! :wink:

[tiredofpain07]

Wittesea,
I ( well hubby) found this posting this morning & I cant tell you how you have hit the nail on the head. The majority of my family has no idea what I go throu on a daily basis---but Im going to make sure that they read this. I get how I should be able to take an advil & "feel better". I have rsd/crps & the pain is on most days especially rainy days-----unbearable. Ive tried to explain to them how bad the pain is---they just dont get it.
I cant tell you how when I was reading this---it was like--yep thats how it is. Thank you so MUCH for posting this, it is an excellent tool that Im going to show as many people as I can---maybe then they will get the point & with any kind of luck understand what its like to LIVE with chronic pain. I know alot of doctors that need to read this also. :)
Thanks again.
Janet

[ams0310]

Another great tool for explaining pain and limitations to others is the Spoon Theory.

http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php

thanks for the link, I really needed this link today.

[Peter B]

Wittesea,
I ( well hubby) found this posting this morning & I cant tell you how you have hit the nail on the head.
Thank you so MUCH for posting this, it is an excellent tool that I'm going to show as many people as I can---maybe then they will get the point & with any kind of luck understand what its like to LIVE with chronic pain. I know a lot of doctors that need to read this also. :)
Thanks again.
Janet
Just to keep the record straight about this letter.

It was written by Bek Oberin in the early days of the Internet. She was a keen blogger and had (may still have) her own web site.
Here's a link that might satisfy your curiosity.
http://209.85.141.104/search?q=cache...lnk&cd=3&gl=au
The article was originally titled,"An Open Letter To Those Without CFS."
It seems to have been hijacked a lot since then, so you will see slightly different versions around.
CFS was an early name for what is now more accurately known as M.E.
My daughter has had it severely for 16 years or so, and in the early days was in contact with Bek.
Incidentally, Bek has changed her name to Ricky Buchanan.

[braingonebad]

Partly why people just can't grasp what it's like is, because when we are really bad, they don't see us. Who can get out on a really bad day?

A few years back, my mom and sis stopped over, must have been about 9-10 am. I had just woken up and was frankenstien walking to the kitchen. You should have seen the look of horror on their faces.

"What happened?" sis says.

"Morning, morning happened." I replied. I'm always a Halloween decoration first thing in the morning lol.


Most of this is invisible, but some is intense enough anybody can see it. Maybe if we took video of our worst times and showed the docs, they'd do more?

[brainiac]

Thought I would add this valuable resource to our new forum. For those who haven't seen this before, the author is unknown, but it has helped so many people to be able to explain chronic pain to our loved ones.


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 that think they know, many are actually 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, my 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 everyday. 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 substituting, "sitting", "walking", "thinking", concentrating, "being sociable" and so on ... it applies to everything. That's 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 some things 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 than 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 that I do have to do it right now - it can't be put off or forgotten 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 worldwide networking (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 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 you help me 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.

------------------

TIPS FOR DEALING WITH PEOPLE IN PAIN

People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.

An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.

Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.

The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.

Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.

Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.

Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.

Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.

We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
Thanks for the letter, I'm new here but that letter is beautiful as it is meaningful, I couldn't have said it better thanks for sharing

[RhiannonsMoon]

There are few things worse than chronic pain. I ended up at the ED with it not that long ago. I pleaded with my partner to right hook me, king hit me, make me unconscious, stop the pain under any circumstances...he wouldn't.

After the pain I've had through illness, I thought nothing could be more painful...but nothing prepared me for the excrutiating agony of chronic pain. It isn't something I actually "Suffer" with because it has only just happened to me. It's a situation where anxiety & panic combined with fibromyalgia and stress just pounded me into the ground and my ribs collapsed (closed down on muscles & tissues) trapping my nerves.

I never want it to happen ever again. I thought peritonitis and childbirth was bad..uh uh!

So you those of you who suffer with chronic pain have my complete empathy. I had sympathised with you before the bout I had...but now its genuine empathy, and I do feel anxious for your next attack...

[Dmom3005]

Hi this is a wonderful way to explain Chronic pain, fibromyalgia and even
some other things. But its so nice that I can use this tool when I need it.

Thanks to the person posting it.

Donna

[Peter B]

There are few things worse than chronic pain. I ended up at the ED with it not that long ago. I pleaded with my partner to right hook me, king hit me, make me unconscious, stop the pain under any circumstances...he wouldn't.

After the pain I've had through illness, I thought nothing could be more painful...but nothing prepared me for the excrutiating agony of chronic pain. It isn't something I actually "Suffer" with because it has only just happened to me. It's a situation where anxiety & panic combined with fibromyalgia and stress just pounded me into the ground and my ribs collapsed (closed down on muscles & tissues) trapping my nerves.

I never want it to happen ever again. I thought peritonitis and childbirth was bad..uh uh!

So you those of you who suffer with chronic pain have my complete empathy. I had sympathised with you before the bout I had...but now its genuine empathy, and I do feel anxious for your next attack...
And it's not always as bad as what you experienced.
Even a constant ache or soreness that just doesn't stop can really wear you down, mentally and physically.
You are never free.