The World As I See It

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 doesnt mean Im 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 dont seem like much fun to be with, but Im still me stuck inside this body.

I still worry about school, my family, my friends, and most of the time – Id still like

to hear you talk about yours, too.

Please understand the difference between happy and healthy. When youve got the flu, you

probably feel miserable with it, but Ive been sick for years. I cant be miserable all the

time. In fact, I work hard at not being miserable. So, if youre talking to me and I sound

happy, it means Im happy. Thats all. It doesnt mean that Im not in a lot of pain,

or extremely tired, or that Im getting better, or any of those things. Please dont say,

oh, youre 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, youre welcome.

Please understand that being able to stand up for ten minutes doesnt necessarily mean that

I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty

minutes yesterday doesnt mean that I can do the same today. With a lot of diseases youre

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. Thats what chronic pain does to you.)

Please understand that chronic pain is variable. Its quite possible (for many, its common)

that one day I am able to walk to the park and back, while the next day Ill have trouble

getting to the next room. Please dont attack me when Im 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 dont 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, dont 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

cant always read it on my face or in my body language. Also, chronic pain may cause

secondary depression (wouldnt 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 cant be put off

or forgotten just because Im 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 dont. Its not because I dont appreciate

the thought, and its not because I dont want to get well. Lord knows that isnt 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 wed 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 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 is probably because I am. Its 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.

AUTHOR UNKNOWN