For those of you that know someone with lupus (or any
chronic illness for that matter) all we ask is that you don’t say the following
things:
- “You’re always so late!”
The thing with having a chronic illness is that we
are ALWAYS tired. Even if we sleep for 8 hours, we STILL wake up tired. Mind
you, our body is constantly fighting to heal itself, and in the midst of all of
that, we lack energy. We also move a lot slower than most people. I know when I’m
getting ready it takes me about an additional 45 minutes to get ready than my
husband. (I usually try to start getting
ready before him so we can finish about the same time!) Any ways, we’re
late because we are struggling to get there. We want to support you, be there
for you, and attend outings, but our bodies won’t allow that sometimes. Please
understand we are trying to be supportive and show our faces, just don’t be mad
if we show up a little late… we really took every piece of energy we had to
show up!
- “Maybe you should exercise more.”
OMG!!!!!! If I hear this one more time!!!! So,
truthfully... I am a person who believes that with a healthy lifestyle, you can
feel better! HOWEVER.. don’t assume that I’m not trying to make better choices
with my health. Let’s not forget about those with chronic illness that are
unable to move around and exercise because it’s already so painful to just
simply walk a couple of feet away. Stop trying to be my personal trainer!!
Believe me, all of us chronically ill people WISH we could get up and move
around more.
- “You were just looking fine a couple
of hours ago!”
And that’s the crazy thing about a chronic illness,
you can feel fine just a couple of hours ago (and just to put this out there,
we aren’t really fine… what you saw a couple hours ago was us faking and trying
to keep it together) when we’re looking at our worst, it’s because it is to the
point to where we literally CAN NOT fake it anymore. We are fighting this
disease 365/24/7 and most of the time we are pushing ourselves just to live a
normal life. Especially those of us that are married or have a family. Society
doesn’t care that we are ill. Bills still have to be paid, family still have to
be taken care of. There’s no sympathy for us. We push extra hard to seem normal
and strong because we HAVE TO!!
- “Do you need me to do something?”
This one is kind of tricky because it depends on the
person, but If anyone else is like me, it’s very hard to ask someone to help me
or give me something. Do us a favor
and just do it. (haha!) For example, If you see that I’m stuck in bed and
unable to cook, you can bring me a turkey sandwich from Subway!!!! I’m married,
so my husband takes care of me a lot but for the chronically ill patients that
you know are fighting this disease alone. Be kind and feel free to offer your
help EVEN if they don’t ask for it. We greatly appreciate it, seriously!
- “My friend has *insert another illness here*
maybe you should try what she’s doing, it’s similar to what you’re going
through.”
DO NOT!! I
repeat, DO NOT compare my illness to someone else’s. No two persons are the
same when it comes to a chronic illness. Someone you know may have cancer…. BUT
cancer IS NOT LUPUS. Now that I think about it, honestly, two different patients
that both have lupus aren’t even the same. This disease is so very complex and
hard to understand. There are medical professionals that don’t even understand
what we go through. So please, please don’t compare us to someone else’s
struggle. We get that you want to help us, but don’t try to be our doctor, just
be our friend.
- “I never hear from you anymore!”
It’s because I’m sick and tired of being sick and
tired. (Ha!) Every day is a struggle. It really is. We are mentally and
physically drained… and some days we have to take time to ourselves and just
get it together. We’re fighting every day to not give up and when you aren’t hearing
from us, it’s ABSOLUTLEY NO offense to you… we’re just trying to balance all of
what we are going through and sometimes that takes isolation. Send us a text
message, shoot an email, leave a voicemail, write me a note and leave it at my
door, it doesn’t matter!!!! Just don’t lose touch with us. We need you now more
than ever!!!!
I hope this blog has helped those that don’t
understand, get it just a little.
And although the list goes on, these are some of the
main ones I encounter on a weekly basis. What about you all? Leave your
thoughts in the comment section below.
