ONES WHO DON'T HAVE FIBROMYALGIA/CHRONIC FATIGUE SYNDROME
Open Letter to people without FMS/CFS:
FMS/CFS means many things in my life have changed and most of them are
invisible. Unlike having cancer,
which is treated with chemotherapy or being hurt in an accident where one would
be encased in a cast as evidence of ailment. The so-called average person does
not understand even a little of the truth about FMS/CFS or its effects. Of those individuals that think they do know, many are
grossly misinformed. In the spirit
of enlightening those of you who may wish to know more, these are the things
that I would like for you to understand about me before you judge me.
understand that being sick doesn't mean I'm not still a human being.
I have to spend most of my day in considerable pain and exhaustion, and
if you visit I probably don't seem like much fun to be with, 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.
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. It doesn't mean
that I'm not in a lot of pain, or extremely tired, or that I'm getting better,
or any of those things. 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.
understand that being able to stand up for ten minutes, doesn't necessarily mean
that I can stand up for twenty minutes, or an hour.
Also, just because I managed to stand up for thirty minutes yesterday
doesn't mean that I can do the same today.
With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
repeat the above paragraph substituting, "sitting",
"being sociable" and so on as it applies to everything. That's what FMS/CFS does to you.
Please understand that FMS/CFS is 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 for you then ask if I can.
In a similar vein, I may need to cancel an invitation at the last minute;
if this happens, please do not take it personally.
Please understand that "getting out and doing things" does not
make me feel better, and can often make me seriously worse!
Telling me that I need a treadmill, or that I just need to loose (or
gain) weight, get this exercise machine, join this gym, try these classes may
frustrate me to tears, and is NOT CORRECT.
Don't you think if I were capable of doing these things, they would
already be done? I am working with
my doctors (one of whom is a specialist) and am already doing the exercise and
diet that I am supposed to do.
statement that hurts is, "You just need to push yourself more, exercise
harder." Obviously FMS/CFS
deals directly with muscles, and because our muscles don't repair themselves the
way your muscles do, this does far more damage than good and could result in
recovery time in days or weeks or months from a single activity.
Now, here's a cheery thought. FMS/CFS may also cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end?) BUT FMS/CFS IS NOT CREATED BY DEPRESSION. 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 cannot be put off or forgotten just because I'm out with you for the day (or whatever). FMS/CFS does not forgive.
you want to suggest a cure to me, 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 were something that cured, or even remotely helped, all people
with FMS/CFS would know about it. This is not a drug-company conspiracy, there
is worldwide networking (both on and off the Internet) between people with
FMS/CFS. IF something worked we
after reading all of this, you still want to suggest a cure, then do it, but
don't expect me to rush out and try it. I'll
take what you said and discuss it with my doctor.
In many ways I depend on you, the people who are not sick.
I need you to visit me when I am too sick to go out.
Sometimes I need you help me with the shopping, cooking or cleaning.
I may need you to take me to the doctor, as it affects my vision so I'm
often not safe to drive.
need you on a different level too. You're
my link to the outside world. If
you don't come to visit me or call then I might not get to see or hear from you. But, first and foremost, as much as it's possible, I NEED YOU
TO UNDERSTAND ME!
loving friend or relative
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