A Letter to People Without Chronic Pain

Sunday, February 01, 2009

I can across this open letter on a site that I should have bookmarked. If any one knows where it came from let me know and I'll post the appropriate link to the site.

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 it’s effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those of you 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 does not mean that 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 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.

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 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 your looking 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 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 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 is 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 it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things 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 it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and 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 period of time can cause more damage and physical pain that you can 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 take these pills now, that probably means that I have to do it right now- it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for 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 may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would 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 defiantly not for lack of trying. If, after reading this, you still feel the need to 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. 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 accept me as I am. I know that you can not literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – people who are not sick. I need you to visit me when I’m too sick to go out… Sometimes I need you to help 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 I asked a lot of you, and I do that you for listening. It really does mean a lot to me.





Oh, goodness. These are the same words I have expressed to family members over the course of the last 3 1/2 years. Its almost as if someone took my thoughts and placed them here. Thank you for sharing.

By Blogger Texas, at 5 February 2009 at 10:46  

Your welcome Texas. I had the same reaction when I came across it. Likely there are others like ourselves who feel the same. Maybe they send there love ones a copy. Maybe it will help the love ones in our lives to be mad at the illness and not to take blaming the patience.

By Blogger versilleus, at 6 February 2009 at 23:33  

whoa, that is well-written.

By Blogger deborah, at 11 February 2009 at 16:18  

Talk about an understatement:) . If anyone has any idea to who wrote the original, I would love to give them the appropriate credit for their amazing insight.

The "letter" has some of the best wording to explain to non-chronic pain sufferers I've ever read. I wish I had come across at the beginning of my cluster headache journey. It probably would have help friends, relatives, Md's and everyone in between to better understand what/how life is really like as chronic pain sufferer. Lately I've been printing & forwarding it off to any and everyone who wants to understand chronic pain better.


By Blogger Versilleus, at 11 February 2009 at 17:19  

I'm glad you found the letter helpful - I wrote it originally as A Letter To Those Without CFS/Fibro and later a version as A Letter To Those Without Invisible Disabilities/Invisible Chronic Illness. I'm not sure who adapted that specific version but it's since been adapted for many, many different conditions and disabilities.

I'm glad it helped you.

By Anonymous Anonymous, at 10 May 2009 at 23:32  

Yes, very moving and very true things. All too often, when someone has a problem, everyone else sees the problem as the person, rather than seeing the problem as merely being part of the person.

By Anonymous prozac, at 12 May 2009 at 23:52  

Thank for posting this. Im a female suffering from cluster pain, but i consider myself very lucky as it only happens once a year and normally last for a week or so. However, the intencity and duration of the pain is far more higher from 6hours to 10hours continuously in a day. I strongly relate to the author's experience and wish for a cure. One week in a year wreaked havoc in my life, unable to care for myself let alone go work and people around me think im a wuss who cant take some pain. It was miserable. But like many of us fellow sufferers, we learn to live with it.

And thank you all for sharing the experience because i dont feel so alone anymore during the attack period.

P/s: took me 1 hour to write this, im into my 6th hour of (i guess) 10hrs bout of excruciating pain today and 5 more days to go.

By Anonymous Anonymous, at 5 August 2013 at 22:46  

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Medical terminology can cause confusion at the best of times. If there is a word you do not understand all you have to do is double-click on it and the definition will appear! Don't forget to drop me a line by email at versilleus@gmail.com with your comments, questions‚ recommended resources‚ concerns‚ & especially your experiences with clusters. Or come find me on my Facebook Profile to add me as a Friend. Whether you are a supporter‚ care-giver or sufferer. I would love to hear from you!

*Please do not use this information for self diagnoses. Writing about my experiences with chronic cluster headaches & epilepsy is a good outlet for me. Consult your Dr. with any kind of headache or chronic pain you may have. The 3rd party links on my site I have found to be a good resource to me over the past few years & dearly hope they will benefit you as well.*

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