A Letter To People Without Chronic Pain

[Farmer C]

I found this on another forum and thought it may help some people.

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 have asked a lot from you, and I do thank you for listening. It really does mean a lot.

AUTHOR UNKNOWN

**********************************

TIPS FOR DEALING WITH PEOPLE IN PAIN

1. 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.

2. 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.

3. 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.

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

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

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

7. 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.

8. 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.

9. 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).

10. 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.

11. 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.

12. 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.

AUTHOR UNKNOWN

[Guest weirdofmouth]

chronic pain. yes believe it or not I understand. About 17 years is chronic. Last few days I've been crawlin round wailing like a baby (back in almost constant spasm). Your mind can only do so much. Your medicines can only do so much. I try to laugh at it and even curse my body but it's all futile. There's wisdom to be had from it, I'm sure, but I don't wanna be wise at this price!!

[anaconda19]

ive been in chronic pain for three years, no one understands who hasnt been through it, its tough, both of the above posts look like they could have been written by me...

lets hope medical science keeps advvancing at a high rate....

[Arnold Layne]

Almost in tears with agreement after reading that!

[maryjane]

Word Arnold

I have thought and spoke some of the above, but never wrote as succinct.

[little wing]

thanks mintball. it says much of what i would like to tell people, or have tried to tell people.

nearly 15 years for me of living with constant pain and chronic ill health. it does leave one feeling incredibly isolated and alone and oh so very fed up with it all.

[BadKittySmiles]

My husband looked over from his computer and saw me getting teary eyed.. those are all thoughts that circle my head when I have to leave the house and co-exist with other people. I only go out a few times a month, that includes grocery shopping. Besides that, I hardly even go downstairs to the kitchen. My husband does nearly all the house work, and I cook dinner, it's about all I can do besides work in the grow room which I do at the cost of my body and my abilities elsewhere in the house. But when friends, relatives and others see me, they'd hardly know anything was wrong.

Pride and the internal anguish it causes is almost as bad as the chronic pain itself, it's isolated me from everyone I knew growing up, including my direct family. No one seems to understand, they seem to think it's a matter of exercise, or being more sociable. I have a hard time conveying to them that it's not, I want to be 'normal' around them, so for years I hid what was going on and, sadly, instead of making me appear strong, it's just degraded my credibility in their eyes. When we're together, I gather all the strength in my being to do the things they do, and even outperform them if I can. "Why could you do it yesterday/last week, but not now" is something I've heard, and my seeming unreliable by promising things when feeling well, just to decline on the day because I'm sick... I can relate to it all.

This was a good read.

Edited February 6, 2010 by BadKittySmiles

[Arnold Layne]

Topic pinned.

[FlowwolF]

Topic pinned.

Bravo! ',;~}~

I'm not a chronic pain sufferer, and still all that was said in the OP makes perfect sense to me - dare I say 'I understand' ?..

However, I'm not exactly a stranger to protracted periods of pain - I almost lost a leg in a MC accident (shattered femur, central 3 inches - nothing but crumbs). I was in constant, often excruciating pain for about 6 months (although I was active almost the whole time) and now © 10 years later, only occasional trouble, but at least *everyone* I interacted with understood what I was going through - *it was obvious*.

Now I also suffer from occasionally crippling lower back problems that can start after just making a meal, washing up, shaving - any kind of slight stooping, or from lifting or riding my bicycle, ven raching into the fridge for a bottle, but when my back is not bad, I am 'wick' way beneath my years. Now this a lot of folk don't understand, and so many people I meet or know make me feel awful for refusing to help with a heavy task, whilst apparently weaker/less able people get stuck in. I figure on a comparative scale with the attitudes many chronic pain sufferers face, a scale of 1 to 100, my experiences rate maybe an ambitious *1*.

Take care.

[chiliman]

wow that's spot on i have suffered chronic pain for last six years

an all that to has gone through my head not all at once you understand but

on different occasions chronic pain sucks an more than likely to make you an addict of

prescribed medicine unfortunately when in chronic pain things like that don't matter

JUST GET ME OUT OF PAIN sorry to shout but that's how i feel i just thank the green gods

for me ganja so i don't have to take as much prescribed drugs

to all the peeps with chronic pain my thoughts are with you my friends

sorry if this makes no sense took my morphine half hour before i attempted to reply

Edited February 7, 2010 by chiliman

[Cambium]

I have been in denial about the seriousness of my pain levels. I was cry-laughing bubbles out of my nose and over my keyboard while reading that. Laughing because of the precise similarities between the writing and my experience, crying with relief I didn't think I deserved to call it Chronic pain, seeing what some folk on these boards and in the hospital beds next to me have to put up with..... I'm starting to realise how wrong I was

When this was posted yesterday, I (looking back) purposefully didn't read it. My sub-concious avoidance of my disease kicking in I'm glad I read it this morning. It explains so much frustration and upset that has occurred from seemingly nowhere, from what others would see as benign, meaningless conversations, encounters and experiences.

Does anyone think it is wrong to print this into a nice card and send it to a few close friends and family that struggle to understand my situation? I'm not sure. Mrs C says yes.

Many thanks to the writer and to mintball. Understanding is such a comfort and a step forward

[Farmer C]

I have been in denial about the seriousness of my pain levels. I was cry-laughing bubbles out of my nose and over my keyboard while reading that. Laughing because of the precise similarities between the writing and my experience, crying with relief I didn't think I deserved to call it Chronic pain, seeing what some folk on these boards and in the hospital beds next to me have to put up with..... I'm starting to realise how wrong I was

When this was posted yesterday, I (looking back) purposefully didn't read it. My sub-concious avoidance of my disease kicking in I'm glad I read it this morning. It explains so much frustration and upset that has occurred from seemingly nowhere, from what others would see as benign, meaningless conversations, encounters and experiences.

Does anyone think it is wrong to print this into a nice card and send it to a few close friends and family that struggle to understand my situation? I'm not sure. Mrs C says yes.

Many thanks to the writer and to mintball. Understanding is such a comfort and a step forward

Hey Cambium and everyone else. Glad you liked this letter. I found it online in a support group about 5 years ago, and I have searched and searched to find it. The support group doesnt exist any more, however I used the Wayback Machine that takes snap shots of the internet and allows you to go back and look at sites as they where a number of years ago. I managed to find it and thought I would post it.

I don't think there is anything wrong with printing it and giving it to close friends and family. I think it helps people understand and it is very accurate to how chronic pain affects you.

I think its wonderful that it is written by Author Unknown, as it surely could have been written by anyone who suffers with Chronic Pain.

Mintball

[bhudika]

an excellent find, i just showed it to my wife who has put up with my issues for the last 6 years and she commented on how reading it has made more sense of my problems for her, top stuff and oh so true to life, i am gonna print it for a few people i know and also send a copy to the pain clinician at my local hospital, chronic pain is so dfficult to get your head around if you have never experienced it first hand and even more so for medical professionals but that is the best explanation i have ever come across

[gen131]

excellent explanation of interacting with people with chronic pain many chronic disabilities. highly recommended.

gen

[edd.excessive]

Wow this really verbalised alotta of things which i find difficult to express without embaressment really. Ive had chronic stomach pain fr 6 years know. Including all the of the way through my secondary school. I really struggled with getting in to school as i had little stanima and movements makes my pain alot worse. Alotta of my classmates didnt believe me, nor did many teachers making it very hard to cope really. Im defiantalty going to use this to help people understand my condition.