This has been posted before, but I couldn't find it so I'm doing it again


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.
************************************************** **************************************************

Thanks Bob.

This appeared here on NT when we first opened:

http://neurotalk.psychcentral.com/thread470.html

I have looked on the web too, and find it "everywhere"... I cannot find the original author. Some sites state: Author Unknown.

Thanks so much for reposting this! I'm joining to print it out, laminate it and stick it to my front door. I wish it was short enough to put on a tee shirt.

The first time a read this years ago it changed my perception on how to deal with others better. Most do not understand in the least bit.

Here I am at work on mandatory overtime and last night I woke up at 2am with my whole body on fire and that was all the sleep I got. Am I tired? Dang tiered. Do ppl know this? No, do I still try to look happy and healthy? You bet I do, I'm doing the best I can to get through this day and everyday! Though I haven't told anyone I feel better because I just told everyone here!!!

I have 2 adult daughters and a couple of friends who don't seem to "get" it. They know I need to use a walker, that I cannot do stairs, have to spend lots of time on the couch, spend a few days a month going to doctors' appointments, refilling scripts, etc. But mothers/old friends are usually strong & healthy, aren't they? Didn't you used to be able to walk, shop, cook, travel, work, ride the subway, drive?

I guess the friends who don't ask me to the movies or to dinner don't want the hassle of having to help me into or out of the cab. Or of having to find a spot for the walker in a restaurant. Maybe they're not really the friends I need. I have kept friends who knew me before PN & I'm grateful for that. But new acquaintances seem to think of me as so "different."

I wish they'd read this letter. It would maybe clarify chronic pain for them.

From what I have noticed is some people like my mom and her friend research on the internet,send a card to say thinking of you and are genuninly concerned and want to help. Then there are people like my gramps who all the educations and explaining to them they still are clueless and don't even call to check in. It hurts a lot and makes me even feel more lonely and like an alien I call it but I try to focus on the people who do care. The people who don't have some underlying issues I feel and it is not just us who they treat this way but I am sure others in different circumstances. A true friend or family is one who is there through good and bad. I am so thankful for the people I have met for ex on here who are so caring and are there always especially since everyone faces so much. Hugs to all

So print out a few copies and send it to them via US Postal service.
That's what it's for!

I've thought about doing this but I'm not sure??? Those who think your looking for attention it can make it things worse...... one has to want to understand.

Bob,
Nice article, I have retained a few real friends, but over all have quit being active in the American Legion, Masons (still pay dues) and yearly civic activities.I feel better being somewhat withdrawn as it gives me more time to tinker around the shop and cut, split wood (5 cords this year) driving thru the woods on the 1950 ford 8N and being close to nature. My youngest brother lives close and just retired and its a joy helping him to adjust. U-Tube is a great benefit as I'm always experimenting with projects, making hydrogen generator, a wood gasifier this winter, solar experiments,etc. The wife has adjusted to her work career being closed down and we have a 2 year old grand niece we baby sit( she rather stay here most of the time) she has been a godsend to us. So all in all I'm pretty well off spiritually and financially. Being able to visit this forum and associate with you fine folks is another godsend and I have become very attached to you all. The flareups and not being able to keep up with my grandniece are the basic negatives. Will end here, God Bless you all
Lanny