Letter to those without Chronic Pain - Medical Times Article

[Amanda]

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.

[Karyn]

This is such a great letter. I cry my eyes out ever time I read it!

[TracyB7777]

That is fabulous!! You've given me many ideas on how to address some of the questions I'm receiving; not to mention the people that "see" me looking fine and just don't understand because it's not readily visible to them.

Again, thank you very much for posting this!!

[Ray P.]

I have given this letter to a couple of people with different reactions. One person got upset; maybe because they feel we are criticizing their reaction to are pain and not open to there suggestions.

[Amanda]

There is no easy way to explain to people that sitting is something that is very painful....I today had a phone call with a friend who still asks me how is my back? Without wanting to sound cross I just told her it was just the same!!!!

[JeanieC]

Amanda,

Thank you for writing this letter that describes the kind of pain we have as well as the reactions and comments we receive from well meaning friends. This will give me some words to use and ideas for what to say. Right now I am having to deal with friends who don't seem to understand that this is not a surgery that you recover from in 6 weeks.

Jeanie

[Amanda]

Jeanie

Well I remember trying to explain to people that while normal surgery takes about 6 weeks to recover from ....nerve surgery can take much longer....they never got it and I cannot change how they accepted the information....I am going back many years now as my surgery was 6 years ago...I have never recovered however those people I dont have contact with anymore which is fine with me...I dont need to explain things anymore! Everyday is a new day and I hav eto accept things as they are now!

[roxy1]

WOW! What a super letter. You have done a grest job of explaining the unexplainable. I have been so frustrated lately with my family just not wanting to hear about it any more....It is so hard on them too...And truly they do not live it so they can not understand....they miss the old me and so do I so so much

Thanks,
Roxy

[JanetM]

Wow, I'm so happy to have read this letter. I really appreciate the time and emotion that was put into writing this. I have never had chronic pain, but I do have a close relative who has chronic pain. It can be miserable. I'm glad that I read this because it can help me understand (the best that I can) what they go through on a daily basis. I also think that it is a great for those who think they might have chronic pain to read something like this. I think it would help them know that they are not alone and to seek specialists on pain management as soon as possible. Thank you again for writing this!

[carolynm]

this is amazing. thank you.