Having CFS means that many things change, and a lot of them are invisable.
Unlike AIDS abd Cancer, most people do not understand even a little about CFS
and its effects, and those thinking that they know, many are actully mis-informed.
These are these are the thing I would like for you to understand about me before you
judge me...
Please understand that being sick doesnt mean that I'm not still a human being.
I have to spend most of my time resting and I may not seem like great company, but
I'm still ME stuck inside this body. I still worry about work, money, love, friends,
family and you. Most of the time I'd like to sit and listen to your worries too.
Please understand the difference between happy and healthy. When you've got the flu
you probably feel miserable with it, but I have been sick or months. I can't be miserable
all the time, in fact I work hard at not being miserable. So if you are talking to me and I
sound happy, it means that I am happy. But that is all. I may be tired or in pain, I could be
sicker tahn ever. Please don't say "Oh, you're sounding better!" I'm not sounding better, I'm
sounding happier. If you want to comment on that you are welcome.
Please understand that being able to stand up for a while doesn't necessarily mean that I can
stand up for hours or even all day. As it is quite likely that little more than a hour has
exhausted my resourses and I'll need to recover - Imagine an athelete after a race. They
couldn't repeat that feat right away either.
Please re-read the above paragraph substituting "standing" for "sitting up", "walking",
"thinking", "being social" and so on and so on... it applies to everything.
Please understand that this illness is variable. It is quite possible (for me, it's common)
that one day I may be able to walk around the shops for a while, but then the next day
getting up and having a shower may exhaust me. Please don't attack me when I'm ill
by saying "But you did it before". If you want me to do something, just ask if I can and
I'll tell you.
Please understand that "getting out and doing things" does not make me feel better.
In fact many times it may make me worse, I start to feel useless and unable, making
me miserable.
Please understand that getting better from an illness like this can be very slow. People
with CFS have so many systems in their bodies that are out of whack and not functioning
correctly, that it may take a long time to sort everything out.
I depend on you for many things -
But mist importantly, I need you to understand me.
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