A Letter to Normals from a Person With Chronic Pain
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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 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.
Reprinted from USResolve.org - Adapted from
a work by Bek Oberin. Contact Information Unknown
this file not directly accessible
