Monday, March 28, 2011

Endometriosis Awareness Day 28

With Endometriosis many women experience chronic pain..

Letter to people without chronic pain (applies equally to
chronic illness),

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 of 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 respect 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?

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 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 and 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 am right in the
middle of doing something. Chronic pain does not forgive, nor does it wait for
anyone.

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, 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.

-Author unknown.


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1 comment:

  1. I love this. I can totally see you writing something very much like this. I;m always happy to be your normalcy... well as normal as I can be =)

    ReplyDelete