Dominie's Fibromyalgia and Chronic Fatigue Syndrome Update 3-25-06

(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 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.

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.