Passing this on from a friend on face book She did not write it. I do not know who wrote it but this says it all better then I could ever explain how it is to live with 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 of 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 respect 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?

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 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.

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 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 to 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.

-Author unknown.

WOW so very true. I often wonder why people just can't "get it" and that description really explains why. Thanks for the post, Lisa

I think we all should take this letter to our doctors too so they really get an idea of what our lives may be like!

When i tell my doctor that my quality of life is very poor, i know he does ot get the whole picture. this really paints it well.

I am also thinking of emailing it to friendships that i have lost along the way to this illness. I use to be a business networking machine and when i got ill i couldnt go to meetings anymore...those relationships just went away...i missed the interaction with other business people. i find myself living in the past in my head...saying "I wish my life was like it use to be" i am very disabled from this and am mostly in bed because of it. just going to my car to take a drive takes much effort. people just dont understand.
Praying for a cure!
Lori

Hi, i think you should look on f/b butyoudontlooksick.com----regards

O yes, we use BUT YOU DONT LOOK SICK site with our patients and family members ALL the time. Its the best!

WOW All I can say is that this is beautifully written-Thank You for sharing-Fondly-Carol

Im glad it helped!

I re read it now and then to kind of remind myself to have forgiveness for myself and all the things i would like to do but cant always accomplish.

My brain always says get up and go, but my body doesnt agree and i am left frustrated. even things that dont require moving. like i need to get my taxes done for my child that is at college o she can get financial aid. it takes a big chunk of my mental ability to add up all the numbers and deductions ect. i wanted to have this dont in February and look where i am now....but i have to get it dont very soon like by the weekend. one more thing to forgive myself for!
Lori

nothing helps but to know that others are in the same boat with you and that you are not alone. as futile as it often sounds talk to your doctor and demand relief! there are meds out there for you that are legal, legit and will help you everyday to simply function for a few hours like a normal human being. you deserve it! don't worry about side affects or addiction, get relief. meds are out there and will help you. you can always counteract the constpating side affects with laxatives. don't fight the drugs! take them and get relief - it's the only thing that helps me and i hope it does you as well.

This is perfect. Thank you for sharing. I'm going to share a copy with my friends and family and as was suggested above, I'm taking one to my doctors.

Thank you for giving me the opportunity to read this beautifully written note. I suffer from bilateral foot RSD and am presently on disability. My friends have disappeared, my "old" life as a teacher has gone to ashes, and my new life consists of constant pain.

I have always placed the burden of continuing those friendships upon myself. Here at last I have an opportunity to rest in the knowledge that while I may rarely go out, my friends are always invited in.