Having CFIDS means many things change, and a lot of them are
invisible. Unlike AIDS and Cancer, most people do not
understand even
a little about CFIDS and its effects, and of those that think they
know, many are actually mis-informed.
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...
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Please understand
that being sick doesn't mean I'm not still a human
being. I have to spend most of my day flat on my back in bed and I
might
not seem like great company, but I'm still me stuck inside this
body. I still worry about school and work and my family
and 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. I may be tired. I may be in pain. I
may be sicker that
ever. Please, don't say, "Oh, you're sounding
better!". I am not sounding better, I am sounding happy. If you want
to
comment on that, you're welcome.
_________________________________________________________________
Please understand
that being able to stand up for five minutes,
doesn't necessarily mean that I can stand up for ten minutes, or an
hour.
It's quite likely that doing that five minutes has exhausted my
resources and I'll need to recover - imagine an athlete
after a race.
They couldn't repeat that feat right away either. With a lot of
diseases you're either paralyzed or you
can move. With this one it
gets more confusing.
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Please
repeat the above paragraph substituting, "sitting up",
"walking", "thinking", "being sociable" and so on ... it applies
to
everything. That's what a fatigue-based illness does to you.
_________________________________________________________________
Please
understand that chronic illnesses are variable. It's quite
possible (for me, 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
kitchen. Please don't attack me when I'm ill
by saying, "But you did
it before!". If you want me to do something, ask if I can and I'll
tell you. In a similar vein,
I may need to cancel an invitation at the
last minute, if this happens please don't take it personally.
_________________________________________________________________
Please
understand that "getting out and doing things" does not make me
feel better, and can often make me seriously worse. CFIDS
may cause
secondary depression (wouldn't you get depressed if you were stuck in
bed for years on end!?) but it is not
caused by depression. Telling me
that I need some fresh air and exercise is not appreciated and not
correct - if I could
do it, I would.
_________________________________________________________________
Please understand that if I
say I have to sit down/lie down/take these
pills now, that I do have to do it right now - it can't be put off or
forgotten
just because I'm doing something. CFIDS does not forgive.
_________________________________________________________________
Please
understand that I can't spend all of my energy trying to get
well. With a short-term illness like the flu, you can afford
to put
life on hold for a week or two while you get well. But part of having
a chronic illness is coming to the realization
that you have to spend
some energy on having a life now. This doesn't mean I'm not trying to
get better. It doesn't
mean I've given up. It's just how life is when
you're dealing with a chronic illness.
_________________________________________________________________
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. It's because I have had almost every single one of my friends
suggest one at one point or another.
At first I tried them all, but
then I realized that I was using up so much energy trying things that
I was making myself
sicker, not better. If there was something that
cured, or even helped, all people with CFIDS then we'd know about it.
This
is not a drug-company conspiracy, there is worldwide networking
(both on and off the Internet) between people with CFIDS,
if something
worked we would KNOW.
_________________________________________________________________
If after
reading that, you still want to suggest a cure, then do it,
preferably in writing, but don't expect me to rush out and
try it. If
I haven't had it suggested before, I'll take what you said and discuss
it with my doctor. He's open to new
suggestions and is a great guy,
and he takes what I say seriously.
_________________________________________________________________
Please
understand that getting better from an illness like this can be
very slow. People with CFS have so many systems in their
bodies out of
equilibrium, and functioning wrongly, that it may take a long time to
sort everything out.
_________________________________________________________________
I
depend on you - people who are not sick - for many things.
But most
importantly, I need you to understand me.
_________________________________________________________________
Bec Oberin
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