Also from the same site I linked below where I found the letter from Fibro, I found this letter entitled "Before You Judge Me". I feel like both the letter from Fibro and this letter open up the world to a better understanding of what it's like for people who have a severe case of Fibromyalgia like myself. It's amazing to find things online like this that literally quote things I have said out loud about my illness. It makes me feel not alone and very understood. Anyway, here is the letter.
Before You Judge Me,
There are the things I would like you to understand before you judge me…
Please know that being sick doesn’t mean I’m not human. I may spend
most of my day flat on my back and I might not seem like great company,
but I’m still me stuck inside this body. I worry about school, work,
family and friends and I’d still like to hear about yours.
Please understand the difference between “happy” and “healthy”. When
you’ve got the flu you probably feel miserable but it will pass. I’ve
been sick for for so long that I can’t afford to be miserable all the
time, in fact I work hard at not being miserable. So if I sound happy,
it means that I’m happy, it does not mean that I am well. I may be in
pain and 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 mean that I can stand ten minutes, or an hour. It’s likely 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, but with Fibromyalgia 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, and the next I’ll struggle to reach 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 worse. Fibromyalgia may cause
secondary depression (wouldn’t you get depressed if you were no longer
able to participate in life?) but it is not caused by depression.
Telling me that I need exercise is not appreciated or 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, 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 every one of my friends has already suggested every
theory known to man. I tried them all, but quickly realized I was
using up so much energy trying new treatments I was making myself
sicker, not better. If there was something that cured Fibromyalgia,
all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in
writing but don’t expect me to rush out and try it. If it is something
new, with merit, I’ll discuss it with my doctor.
Please understand that getting better can be a slow process.
Fibromyalgia entails numerous symptoms and it can take a long time to
sort them all out.
I depend on you – people who are not sick for many things but most importantly, I need you to understand me.
No comments:
Post a Comment