a letter i found on the internet says perfectly how i feel

when i read this letter i burst into tears as it was if i had sat there and typed it up myself. I have been doing a lot of crying lately more than usual as my pain seems to be getting worse and feels like it is spreadingsad...................

Depression, Personal Story, ResourcesLetter to People without Chronic PainMay 22, 2006 guest 234 CommentsHaving 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

 

Omg that's amazing thank you for posting I will be showing my husband as he still doesn't understand what I'm going threw x

 melissa30395 Thank you for sharing who ever wrote it speaks for every one with fibro. The only people that truly understand fibro is those of us that are going through it. take care gentle hug

Awesome Melissa, thanks heaps for sharing...be blessed! have a lovely day

:-)xxxx

Thanks for sharing helpful to family members who dnt understand xx

That's great. Thanks for sharing 

Hi Melissa

This posting is spot on.  Thank you for sharing and you are not alone.  Please do share your experiences with us on this forum.  We are all here for each other and understand you from a day to day basis.

Gentle hugs and take care winkxx

Thankyou  Melissa..............as you say "put exactly"............Bron

'Oh....my.... God'..   How exact is this!.... How wonderfully exact..   How amazingly this persn has penned mine and your 'Fibro Life'...    

THANK YOU SO MUCH FOR SHARING THIS.... AND AS MANY THANKS TO THE AUTHOR (unknown).....  I salute you.

Now I will go and wipe away my tears having read this...

Same here. I have tried to explain over and over to people what it's like and they seem to understand for a short time but then it's like they just kind of go back to the way they were because they think I must be better because I am laughing at something or I  have a day that I can do stuff around the house. And now I have a  hip condition on top of everything else that will probably require surgery of some kind to fix. I have bone spurs that are pressing either on a nerve or a tendon that runs down the front of my leg to just below my knee. Nothing helps with the pain. They even gave me valium which completely kicked my butt and got me yelled at by my domestic partner alot. (his way of showing concern he says) so I couldn't take it any more. Just been suffering doubley just waiting for the 14th to get here when i see the orthopedist and find out what can be done for it. Right now I would like to take the saws-all and just cut the leg off and get it over with. Thanks for posting this letter and from someone who understands, I hope you are having a "good" day today. The more of those, the better. Hugs

All the very best going forward with your pathway to a resolve with your hip.  Sounds terribly painful.  I do sympathise as I have struggled with a lot of pain for many years... had surgeries which resolved them, only to have a very short reprieve being pain free before having a majorly big car accident which stuffed me up good and proper, head and spine, and now fibro on top...   'Lucky me'....  there were days I had wished I could just pass out for a duration to it was all healed and gone. But no such luck there.  Being told it could take up to 2 years to resolve the issues of pain, never happened.  

Just resently had confirmation that what I suspected was true, is true. That I have acquired the Jack Pot 'Fibromyalgia'....

A pained life but it's had some really wonderful positive aspects to...  :-)

Morning fibrogirlmain; I'd keep taking the Valium......I need mine to keep my muscles relaxed (especially in my neck, otherwise I wake up with a migraine)......how can anyone who doesn't understand/feel this fibro, decide what we need?????..........................Bron

how can anyone who doesn't understand/feel this fibro, decide what we need?????..........................Bron [unquote]

I so hear you Bron..

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morning christine How are you? Hope you had a nice time with your grandson the other day? Hows the asthma hope you are sleeping ok. Its sunny here today. Hope you have a lovely day and weekend take care gentle hugssmile

Well said bron how can they possibly know what we need???? 

Hi deb sorry fibro fog strikes again message ment for bron sorry hun. How are you doing hope you have a good weekend with not too much pain take care gentle hugs

well said bron how can they possibly know what we need?????? totaly agree with you