| "Well,
you LOOK well. " |
Yes we know we look fine
half the time (read don't look ill) but we ARE very ill. Sometimes
this comes across like an accusation. |
| "Oh
I know, I'm tired too." or "I don't sleep much either." |
While both these statements
maybe true for you the affect of fatigue or lack of sleep on you
is not the same as someone with CFS or FM. These illnesses destroy
stage four sleep which you may get even with a good power snooze.
The fatigue is not the same type either. |
| "Don't
they have a medicine to help that?" |
No they don't or we'd all
be taking it and feeling better! |
|
"Isn't that what Cher had? She's
well now."
|
Cher probably did not have
CFS. If she did and got over it praise the Lord for her miracle!
The vast majority of people never get over these illnesses. |
| "I had
that too and took/did _____ and now look how good I am! If you just
took _____" |
What works for one person may not work
for another. If it cured you most likely you didn't have it in the
first place because if there was something that actually cured people
all the doctors would be prescribing it and no one would be sick
anymore. |
| "Well you
can't just lay around feeling sorry for yourself..." [often
this is inferred not stated outright] |
Hey, if we could be doing anything don't
you think we'd be doing it? No one likes to lay around and do nothing
after a few weeks vacation anyway! Its not fun being bored to tears
and unable to do what others do. |
| "You should
_______ [insert exercise, meditate, or any other notion of magic
help]" |
While exercise of the stretching variety
may be good I'm sure those who are ill have already read all they
can on their illness and know what helps and what doesn't. If they've
been ill for months they've probably tried to keep their old lifestyle
going and paid the consequences for doing that and now just want
to maintain what health they have left. Again these illnesses are
quite picky in what they allow you to do and typical 'health' things
do not solve the problems or cure anyone who has them. Some things
can actually make them much worse including aerobics. |
| "You have
to THINK positive!" |
Ok right. I'm barely able to walk to
the kitchen some days without pain yet I can think myself out of
it huh? These kinds of comments imply that its all in our heads
and therefore we can 'get over it' with proper thinking. |
| "You
shouldn't dwell on it all the time!" or some variation implying
you talk about illness too much. |
Yes, we probably do talk
about being ill a lot. But we live it every moment of every day.
Its very difficult to forget about pain and even harder to ignore
brain malfunction. Usually if we talk about it to you its in hoping
you'll learn more about it and understand and not judge us. We often
think (know) our behavior is not normal by your standards and are
trying to explain WHY that is. |
| "Its
not good for you to -be at home all the time - not have a social
life - " |
It isn't good to be all alone. Its not
fun to be home all the time either. But we already know that. Most
of us have discovered who are friends really are after a few months
of illness. The others drift away and don't bother to call. |
| Don't treat us
like we have a mental illness. |
These illness may affect our brain function, may even
make us emotional but we're not mentally ill and no number of psychologists
are going to make it go away either. Some people actually avoid
us for fear they may 'catch it' too. |
| Please don't try
to use guilt producing means to try to bully us into doing things
you want us to do. |
We already feel guilty about not being
able to do things and guilty about how much the lives of our loved
ones are affected by our illnesses. We don't need you piling more
on top of it yet. |
| Don't
avoid us. |
Often once people know we're having weird
symptoms and its called something they don't know much about, or
think we're mentally disturbed, or worry it may be contagious, or
think we're home because you've become a recluse by choice they
tend to avoid us altogether. We can't do things we used to do but
that doesn't mean we don't need an occasional phone call or other
things. |
| Don't
rush us. |
This is especially true for someone who
has just become ill. It takes a while to get used to the idea that
we are very ill and that its not going to go away. If you rush us
we're likely to do things which will only harm us more. Allow us
to go through the grieving process and readjust to this new life
we now have to lead. Be patient as we explore what works and what
doesn't and with our own frustrations about things. |
| Don't
make light of our situation. |
While laughter is great medicine feeling
that our situation isn't serious or have great impact on our total
being is to slight what struggles we are having. |
| Don't
stay so long we feel worse. |
Come and visit us or take us someplace
but don't make it so long that we regret we did anything later on.
It takes us a very long time to recuperate even from small things
sometimes. |
| Don't use our illness
as your excuse. |
This is a good one especially with spouses and family
members.. Being ill is a good target to blame everything on. If
we say something you don't agree with its only because we're ill.
If you get angry about something or upset about something its because
of what you have to put up with (due to our illness) you think.
All sorts of excuses can be made for all kinds of bad behavior and
the real problems YOU have and have overlooked. |
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