"Open Letter
to Normals"
This letter is from http://fmscommunity.org/lettertonormals.htm. It's a great explanation of what it's like to have FMS/CFIDS (Fibromyalgia/Chronic
Fatigue and Immune Dysfunction Syndrome). I bolded a few
sentences that were particularly true for me and sent the
letter to my friends (who I hope are still my friends after reading it) and also
to relatives (who are stuck with me). - Dominie
Open Letter To
Normals
The information on this page may be freely copied for your use
if the text is kept intact and unaltered.
(Explain your condition to the healthy people in your
life.)
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 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 than
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.
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.
Fibromyalgia 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. Fibromyalgia 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 Fibro 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 Fibro, 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.
Please understand that getting
better from an illness like this can be
very slow. People with Fibro
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.
=============================================
Thanks very much for reading
this! If you have friends or family with FMS/CFIDS, they will find lots of
help, hope and information at my site www.fms-help.com, online since
1996.
Dominie Soo
Bush
100 Tips for Coping with
Fibromyalgia & Insomnia
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Fatigue Story
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II Corinthians
1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort
them which are in any trouble, by the comfort wherewith we ourselves are
comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue
Syndrome sufferers and their families.
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