This letter was posted on the Hughes Syndrome Foundation Facebook page. It is a letter to people WITHOUT chronic pain. Lupus and Hughes Syndrome both give sufferers chronic pain. Please take the time
to read this. It is important.
Claudine Goze-Weber
LETTER TO PEOPLE WITHOUT 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 who think they know, many are acutally
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,
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 sustituting, "sitting",
"walking", "thinking", "concentrating", "being social" and so on....it applies
to everything. Thats 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 seomthing 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 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 that 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 I
have to do it right now - it can't be put off or forgetten just because I'm
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 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. 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 a worldwide network (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 of
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 your help 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.'
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