People mean well with the words they say or the actions they
do when dealing with someone who has a chronic illness and pain. I don’t believe anyone intentionally means
the following remarks to be hurtful or annoying, or just ignorant. However, to really try and understand how
chronic pain works on a day to day basis then continue reading. It’s to give people a better understanding of
what is helpful and what is not. Don’t
be offended if you’ve done some of these things either. Don’t be offended by my sarcastic remarks
either. I just want you to be aware. I’ve
studied around on lists other people have made about chronic pain and what is
helpful and what isn’t. It wasn’t surprising
when I found that my list was the same or very similar as others who deal with
chronic pain.
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You don’t look sick- Just because I don’t look
sick doesn’t mean that I’m not. Some
days there is a little more energy to put time and effort into getting ready
for the day. With chronic pain you learn
very quickly how to fake being well.
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Everybody gets tired- Your type of tired and my type
tired are very different. I’m tired just
from lack of sleep. I’m tired from
walking from my bedroom to the bathroom. I’m tired after taking a shower. I’m tired from just sitting there. Pain takes a lot out of a person. It exerts all of your energy.
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You seem depressed- Well I have a debilitating disease,
chronic pain. There are more bad days
than good. Of course some days I will
feel a little down, but that does not mean I suffer from depression, nor does
it mean that you have a clue as to what is actually being felt. It does not help to hear those words.
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You’re just having a bad day- again, similar to
the depression comment, unless you feel the exact chronic pain, please don’t
tell me what kind of day I’m having.
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I wish I didn’t have to work- you should be so
lucky that you have the ability to still work.
I’ve got no work, no money, and a plethora of medical bills. It would feel so normal to be able to work.
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You need to get out more- Please understand how
difficult it is to move. Some days are a
little easier than others but sometimes going out and doing something makes the
pain worse. If you don’t feel it right
away you certainly pay for it the next day.
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Doing one small activity will do you some good- Even small activities like taking a drive can
mean the recovery time of a day to weeks.
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You’d feel better if you got some exercise- If
my body would allow me to move, exercise wouldn’t be a problem. It’s easy to say how much better one feels
after they exercise etc. But those
people are already thin and don’t cry at the thought of trying to get out of
bed because it hurts too much. Also, if it helped I would be doing it.
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It’s all in your head- Feel the pain that I’m
feeling every day and then tell me if it’s all in your head. Believe me, it’s a
very real pain and no amount of talking to myself to train my brain to not feel
the pain is going to work.
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There are people worse off than you- of course
there is, but at the moment, I have it worse than you. And it doesn’t take away how much of your
life is gone due to chronic pain and illness.
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Just be positive or more positive- Some days it’s
OK to have a bad day. I’m always
positive but the world is not ending if I have one day where I don’t think the
sun is shining.
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You seem fine- Once again, I’m really good at
faking being well. I want to have as
much of a normal life as possible. So I
will pretend to the max to just seem “fine”.
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I wish I had time to take a nap- A nap consists
of closing your eyes and maybe for 5 min you can feel a little relaxed enough
before the pain attacks even harder and wakes you from your so called
slumber. I’m lucky if I can get a nap
in. But let it be known, it makes no
difference if I sleep through the night or take naps or don’t sleep at
all. I’m still tired.
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That must be so nice to just lay around all day-
Maybe it’s nice to lay around all day when you have a bad cold or the flu. But when you have a chronic illness, all you
want is to be able to go out and do things. Laying down is just something you
have to do to keep you going through the day.
It’s exhausting to have to lay down all day because your body won’t
allow for anything else.
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Aren’t you feeling better yet? I’m sorry my
recovery isn’t on your time schedule. Is
it annoying to always be sick and in pain? Preaching to the choir here. If my body listened to anything I had to say,
then trust me, I wouldn’t be sick anymore.
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You’re taking too much medicine- you have no
idea the amount of pain that goes on.
You don’t know what is needed and what is not. Until you do, please don’t state your opinion
on medicine You take what you need to
survive the day without having to go to the hospital.
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You need to change your diet- OK, because I
haven’t tried that before. If it worked,
I would be doing it. But it doesn’t.
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Losing weight might help- Most of the medication to
help with the chronic pain and illness make you gain weight. And once again, if that was the cure all, it
would be done. But it goes back to the
exercise comment as well. It’s a miracle
if I can get showered, style my hair, and get dressed without needing a break
in between to rest.
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Are you trying hard enough? - No, I enjoy being
in pain and laying around all day. I try
every day. And just when I think I can’t
push any more, I push. I even push when
I know it will set me back because I want to show as much normalcy as possible.
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You sleep too much- There are few days where it
is possible to sleep. So please, let me
sleep as much as I want. Also know, that
no amount of sleep is going to make me feel less tired.
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You’re just stressed- My body is in super attack
mode. But that is not the same stress as
a normal person would have with a hard day at work or studying for an
exam. If it were that easy, there would
be no problem.
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Oh I get that too- Actually you don’t. Unless
you have chronic pain and illness you can’t possibly understand. A cold or a bad flu isn’t the same. A broken bone isn’t the same thing. But I am sorry if you’re not feeling well.
Because I do understand what it’s like to be sick.
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My friend’s cousin took this medicine and it cured
her. You should try it- Believe me, I research, I try things. If there was some magical cure I would be
taking it. But thank you for thinking of me. Please don’t be offended when I
decline to try it.
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Don’t point out our bad moods- It isn’t helpful
to hear that “you’re in a bad mood” etc.
It doesn’t make the situation better so please just don’t say anything.
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Don’t tell us how we are feeling- Please don’t
attempt to describe how I’m feeling. If you’re right on your assumption, I don’t
want to hear it. If you’re wrong then it
tells me how much you really just don’t understand what I’m going through.
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At least you’re not dying from it like cancer- I
honestly wish I had cancer. Then I would know what I’m fighting and how to
fight it. I may not be dying at a faster
rate like someone with cancer, but chronic pain is torture. It’s a slow,
torturous death. Eventually the body
will start shutting down with the amount of stress it has gone through. It may
take 50 years but it still leaves you without a life. Especially when it’s during the prime of your
life. And sometimes you do tell yourself
“I’m dying” with the amount of pain that is going on. (That does not mean I’m suicidal either).
Most of the time plans are made on a day to
day basis. If I have to cancel please
don’t be upset. It’s that my body won’t
allow it. Sometimes I’ll have to cancel
5 minutes before the event. I wish that wouldn’t
be the case, but I have no control with my chronic pain.
If I turn down an invite please don’t stop
inviting me to things. It’s nice to know
I’m wanted even if you know I’ll say no.
You never know when you will ask on a day or a moment that seems like I
could go and feel OK enough.
If I do make it out to an activity, it
doesn’t mean that I’m suddenly feeling better. It just means that I’m trying my
best to be social and feel normal.
Understand that I love visitors but I don’t
want to talk. I want to listen. So that may be boring but have patience. It
takes a lot of energy to talk.
Sometimes, I don’t want to exert that energy. Even if you are the most amazing person ever.
On that note, please don’t speak for me
either. My brain isn’t dead. Sometimes I just don’t want to talk about
what is going on. Sometimes I do. But let me decide what info to divulge and
only speak for me if you’ve been asked that one time.
Sometimes it’s hard to hear the wonderful
adventures you’ve been having. I envy
that you get to go out live and I get to sit on a couch all day. So If I seem not interested, it’s just
because I feel sad that I couldn’t join in on the fun.
I’m in pain all the time. My tolerance for
people lowers. So I can’t handle
weird. I can’t handle selfish, or fake
people. Just understand that.
I don’t like to think or make
decisions. If you ask me what I want, I
honestly don’t know. I don’t want to think about it. I’d rather you list ideas and then let me
pick from there.
Sometimes, I just want you to come over and
watch movies with me. No talking, no
nothing. Just having the company makes a
world of difference.
Mostly, I just want to know that you love
me and even though you can’t take the pain away, knowing that you’ll be there
for whatever I need is all that matters.
I appreciate all the help that is given.
Even if it’s not helpful, I know it’s out of love. There is no way you will ever 100 percent
understand what I’m going through, but I need to know that you will try.
I believe that one day, there will be a cure.
One day no one will ever have to feel physical pain. That day may happen long after I’m dead. 100
years from now. Or it may come in a year or two. Either way, I believe it will happen. So I will keep fighting and trying to live a
happy normal life as possible. Just be
okay with it if it’s not the same as yours.
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