A Letter to Normals

A Letter to Normals from a Person With 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 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 work, 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", "bei
ng 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.

Adapted from a work by Bek Oberin