Saturday, October 01, 2005

A Letter to People without Chronic Pain

I found this recently on a message board, and thought I would share it with y'all:




Letter to people without Chronic Pain:






Having chronic pain means many things change, and a lot of them are invisable. 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 dosen'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 not being miserable. So, if your talking to me and I sound happy, it means I'm happy. That's all. It dosen'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 dosen'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 dosen't mean that I can do the same today. With a lot of diseases you're paralysed, or can't 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. This is one of the hardest and most frustrating components of chronic pain.

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 " You did it before" or "oh 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 the "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 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 think 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 langauge. 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 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 of forgotten just because I'm somewhere, or I 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 appriciate 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 has includes failure, which in and of itself can make me feel even lower. If there was 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. Its definately 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, its 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 my situation unless you have been in my shoes, but as much as 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 normalcy of life. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot....





(Author unknown)

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29 Comments:

At 9:31 PM, Anonymous Anonymous said...

This comment has been removed by a blog administrator.

 
At 9:34 PM, Anonymous Anonymous said...

This comment has been removed by a blog administrator.

 
At 3:47 AM, Blogger Zen Angel said...

To both anonymous assholes:

Blog spammers are scum.

Have a rotten day.

 
At 10:50 AM, Blogger Fizz said...

Turn on your spam thingamabobber, silly badoodle head.

Oops! I meant to leave this comment on a porn site but I found your blog instead. Have a nice day!

 
At 11:51 AM, Blogger Ayoye said...

This comment has been removed by a blog administrator.

 
At 12:10 PM, Blogger Angel said...

:::Tears in eyes::::: Thank you Angel. I've read that before, but it is very fitting for me lately.

I am so sorry that you have to be in chronic pain too. ((((Hugs)))))

 
At 6:39 AM, Blogger mdmhvonpa said...

Spam-spam-spam ....
Talk about chronic pain!

 
At 6:34 PM, Blogger Stephen said...

Wow. Very moving, and I will share it with people I love. I am not dealing with chronic pain, but I can substitute "fatigue" for "pain," and it still works. Thanks for passing it on.

 
At 8:04 PM, Blogger freestuff2 said...

This comment has been removed by a blog administrator.

 
At 3:39 AM, Blogger Zen Angel said...

Stephen: you're right. It works well for fatigue, too.

Fizz, darling: I would turn on the whatchamacallit, but for one reason...people like me, with certain disorders, have a helluva time with those squiggly letters. It usually takes me two or three tries to get it right. A lot of my readers are disabled...so for now, I will live with the spammers and delete them when I have the time.

 
At 11:37 PM, Anonymous Cecilia said...

Thanks for the posts. I'm so glad when someone else writes something that makes so much sense, aren't you? It's as if there is one thing that you don't have to explain.

 
At 4:00 PM, Anonymous Kerrie said...

Thanks for sharing this. It is such a kind, direct and succinct request for understanding. I'm tempted to print it out and put it on windshields everywhere.

-Kerrie

 
At 12:50 PM, Anonymous Stacy said...

Just wanted to let you know that the 5th edition of the Carnival of Compassion is up at my blog, http://stacy.tmjfriends.com - I used this post... thanks so much!!!! :)

 
At 3:42 PM, Blogger Tom said...

An interesting piece. According to google the original is probably here:
http://brain.hastypastry.net/forums/showthread.php?t=34388
They credit the original author as "Sally" and follow it up with a list of tips to deal with someone who suffers from chronic pain.

Thanks for sharing. There's no way I'd have stumbled upon the original, and it needs to be widely read.

 
At 1:14 PM, Anonymous Anonymous said...

This is beautiful. It is well put, and does not try to make pain-free people understand too much, just a plea for understanding.

 
At 7:40 PM, Anonymous Anonymous said...

I just found this site & cannot believe the eloquence evinced in this post.

Methinks you live in my head!

I'll certainly copy & distribute it to family & friends.

Thank you,
CelSur

 
At 7:43 PM, Anonymous CelSur said...

Hey, I'm not "Anonymous" at all!
Thank you,
CelSur

 
At 7:25 PM, Anonymous Anonymous said...

This is totally it.

 
At 4:13 AM, Blogger Migraine Chick said...

Thank you for posting this. It is an awesome letter.

 
At 5:24 PM, Anonymous Stingo said...

After reading this, I copied it to show family and friends. It says everything I keep trying to explain.

 
At 8:02 PM, Blogger Lisa2008 said...

I was having another painful day and read this post on chronic pain and I felt the weight of the world lift off my shoulders even for a minute . So nice this person who wrote these words to describe how chronic pain suffer's really suffer on a daily basis .
wish there were more of us out there

 
At 3:51 PM, Anonymous jess said...

this is amazing. cant say how well it describes pain.

 
At 11:10 AM, Anonymous Anonymous said...

WOW this is unbelievable..I am a 43 yr. old female that lives with chronic pain and I could have written this myself. I happened upon it and I too think that my young adult children could benefit from reading it-Thank You

 
At 6:58 PM, Anonymous Anonymous said...

Thank you. I'd bow if I could bend down. Pain is a killer. Your wonderful essay is a gift to all of us in chronic pain.

 
At 6:01 PM, Anonymous Anonymous said...

I'm a 36-year-old w/ a chronic pain condition, and in the 13 years I've had & researched it, I've never read this. I'm very glad I happened to find your post. Thank you for sharing this beautifully apt letter.

-Ku Shin

 
At 10:23 PM, Anonymous Anonymous said...

Thank you for posting this! I've found it useful to give to people who have can't make the effort to put themselves in my shoes. It sums up my daily struggle nicely.

 
At 2:20 PM, Anonymous Anonymous said...

Thank you for posting this, even though it made me cry. I'm 18 and have been dealing with chronic pain for years now, this explains exactly how I feel.

 
At 6:29 PM, Anonymous Things To Do In Louisville said...

Really wonderful! my first time to join here. Take care :D.

 
At 8:55 AM, Blogger Bree McDaniel said...

I'd be more interested in an article that explained the emotional effects to the outside party. I actually have MS and trigeminal neuralgia and in the last 3 years I have been accused of a midlife crisis or mild insanity because of the choices I have made for my life.

 

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