[A Letter to the Normal’s from a Person With Severe 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 every day. 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.
Thank you
Jan]
This kind of expresses my frustration of how Fibromyalgia is to me. I put on a good face yet, it's tiring and makes my totally angry...I'm not who I once was...I can't go out and do the things I used to do. I do not like feeling this way but it is part of the package.. I want you to know that mostly, I am so grateful to Heavenly Father that most of the time, I can get through this illness. I guess I do have my moments and these last few weeks are it.
Strange as it seems, it is also the best of times for me..I am now getting referred to the Bariatric doctor for the RnY surgery. I am excited and scared at the same time. That's probably the reason I've been so moody. I love my family for all they have had to put up with.
Today, I read about how to manage your anger and the best way I can describe it to the average "Normal" person is that it is like grieving. All the steps...You must go through it all..time and again until you can 'accept' the situation fully...With an incurrable desease, it is almost impossible to finish the steps...
So. for me, it is important to gain the support I need on a daily basis..Maybe just playing the games online, or chatting with family or friends online.l am trying to do what I need to do and will do so until I have the chance to realize that I can endure...I will endure...I will succeed...and I will persevere...
THANKS FOR LETTING ME VENT TODAY......
