To all of my "normal" friends and family:   

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
doctors 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 I'm 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, as is
the case with herbal remedies.
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 to help me with the 
shopping, the cooking or the 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.