My life with Intracranial Hypertension and Rheumatoid Arthritis.
Tuesday, January 29, 2013
Having RA means...Letter to those Without Rheumatoid Arthritis (Repost)
I have posted this before but I re-read it from time to time felt like it was time to post it again...
Having RA means many things change, and a lot of them are invisible.
Unlike having cancer or being hurt in an accident, most people do not
understand even a little about RA and its effects, and of those that
think they know, many are actually misinformed. 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....
- Please 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.
-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. 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,
-Similarly, please understand that many of my symptoms aren’t always
visible to people who don’t know me well. So if you see me and I look
well, this doesn’t mean I’m not in pain, or not exhausted or not too
shaky to write or sometimes even move, or haven’t lost sensation, or am
not having heart problems etc. Please don’t say "Well you look alright!"
Especially if I’ve just told you I feel ill/have been very ill. I can
look ok and still be very ill. Telling me I look ok not only will not
help me feel better but will make me feel you are casting doubt on the
fact I feel so bad. Feeling sick is hard enough without having to
continually battle to make people believe you are, indeed, sick.
-Please understand that being able to stand for ten minutes doesn’t
necessarily mean that I can stand up for twenty minutes, or an hour.
And, just because I manage to stand up for sixty 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
-Please repeat the above paragraph substituting "sitting", "walking",
"thinking", "being sociable" and so on.... it applies to everything.
That's what RA does to you.
-Please understand that RA is variable. It's quite possible (for me,
its common) that one day I am able to go out for the day, 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 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
-Please understand that "getting out and doing things" does not make
me feel better, and can often make me seriously worse. Telling me I need
a treadmill , or that I just need to lose (or gain) weight, get this
exercise machine, join this gym, try these classes... may frustrate me
to tears, and is not correct....if I was capable of doing these things ,
don't you know that I would? I am working with my doctor and am already
doing the exercise that I am suppose to do. Another statement that hurts is, "You just need to push yourself
more, exercise harder..." Obviously RA deals directly with the immune
system and because our immune systems don't work the way yours do, this
does far more damage than good and could result in recovery time in days
or weeks or months from a single activity. Also, RA may cause secondary
depression (wouldn’t you get depressed if you were hurting and
exhausted for years on end?!) but it 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 cant be put off
or forgotten just because I'm out for the day (or whatever). RA does not
forgive. -If 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 was something that cured or
even helped all people with RA, 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 RA and if something worked we would
know. -If after reading that, you still want to suggest a cure, then do it.
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....people who
are not sick....I need you to visit me when I am too sick to go
out....Sometimes I need you to help me with the shopping, cooking or
cleaning. I may need you to take me to the doctor, or the physical
therapist. I need you on different levels...you're my link to the
outside world...if you don't come to visit me then I might not get to
you. ...and, as much as it's possible, I need you to understand me.
(This was copied from a note on my Facebook page from a friend's page
who copied from a friend's page, etc.. This can apply to many diseases
YOU can't see: RA, Lupus, Fibromyalgia, and other auto-immune diseases
(not disorders). Just because we smile through our pain does not mean we
are not ill, really ill, and in some cases, like mine, dying from the
inside out. Think about this before you judge others.)