but because you know it’s not going
anywhere anytime soon. Acknowledging
that it’s a part of the
play, and giving it a job to handle
will hopefully keep it busy and
out of your way, allowing you to
give your best all-time performance.
As you act out the scenes in your
life, ask yourself the following: is
what I’m about to do going to allow
Lupus to upstage me? Will
my disease, who’s supposed to be
waiting idly behind stage, have an
opportunity to run across stage,
leaping and bounding and causing
a scene? For example, if you
work extra late, or refuse to go to
the doctor, will you be encouraging
Lupus to crash the scene?
Keep these things in mind as you
go about your daily performances
and allow yourself to be the center
stager you’re meant to be!
It is Not Your Fault
Pick three areas of your life that
have decidedly changed since you
were diagnosed with Lupus. You
can probably think of dozens of
examples, but right now, I want
you to focus on just three. Perhaps
it’s your ability to walk your
dog, have patience with your
spouse, and your ability to take
on extra projects at work. Whatever
three things you feel in your
life have been compromised by
Lupus, write them down. Now,
beside each of them, write, “It’s
not my fault.” Realize that you
aren’t to blame for these alterations
in lifestyle. They are either
the direct or indirect result of being
diagnosed with Lupus, and
you weren’t in control of getting
Lupus. You didn’t choose it; it
just happened.
By no means does this excuse you
from taking responsibility for
your actions and dealing with the
fact that you have an illness. But
what it does mean is that you can
no longer blame yourself or feel
bad about “letting” these changes
occur. Lupus, in addition to being
chronic, inflammatory, systemic,
and debilitating, is also lifealtering.
Acknowledging that life
is going to be different with Lupus
will allow you to stop blaming
yourself for your limitations
(most of which are out of your
control anyway), and start dealing
with the disease the best you can.
Prepare to Understand
Most of the people around you
don’t have Lupus, and hopefully,
they never will. Because they’ll
never experience the full-fledged
symptoms of Lupus, they will
never fully comprehend what it’s
like to have the disease. The more
you attempt to explain it, the
more frustration you may cause
yourself. Without a point of reference,
your descriptions are lost.
Even attempting to relate the
mental and physical anguish you
encounter may be futile. While
your female friends may have experienced
swollen fingers during
pregnancy, or your athletic
friends may identify with joint
pain or exhaustion, they can never
fully grasp the enormity of having
a disease in which, a) symptoms
like these aren’t usually attributed
to one particular experience, and
b) these ailments may never cease
to exist. You could spend a lifetime
trying to convey the nature
and severity of your pain and suffering
in contrast to the symptoms
they’ve experienced, but why
waste the time? Instead of straining
to be understood, strive to understand
the limited perspective
of those around you, and learn to
accept the constraints they have
of understanding you and your
disease. Once you allow for the
fact that those around you can’t
be expected to know any better,
maybe you won’t not feel com-
(Connued on page 16)
Internaonal Pain Foundaon—17