Friday, May 10, 2013

World Lupus Day

I refuse to sit back and allow lupus to take ahold of me.
-Reeanna Harrilal



I was not uncomfortable with the timidity I initially felt when deciding to write about lupus.  It always feels the same no matter the subject I choose for a blank page -- deep uncertainty on how to fill it.

But lupus is different. 

It's not a new concept for me.  I remember hearing it in whispered conversations as a child.  But it is a new level of hard for me.

When I feel compelled to write about a topic I always follow a similar process.  I recall my past experiences, do some research, do some reading, thinking, praying, take a deep breath and then jump in.  It takes a long time, and I never know where I will end up or how I will get there, but I've taken the journey enough that the inevitable bends in the road usually feel at least somewhat familiar to me.

Writing about lupus was not a familiar journey.  After hours of research and reading, hours of searching for an entry point, I still felt as confused as I did when I asked my aunts all those years ago: 'What's lupus?'

They told me then that lupus was a really bad disease that some people just get.  No one knows why.  You can't catch it from someone.  There is no cure for it.  It makes people really, really sick.  Sometimes it can make people so sick that they die, but people with lupus can also live for a long time.

That explanation sounded horrible enough to me as a child that I decided not to ask any more questions about it.

As an adult, I've asked more questions.  But to be honest, I still can't really give a better definition than that.

Lupus is complex like no other issue I've studied.  Some call it a 'cruel mystery.'  I searched for a better description, but have yet to find one.

There's relatively little known about who gets lupus and why.  And even fewer treatment options.  No cures, except for the miraculous.

But lupus gets even more complicated.  It is different for different people.  Every case is unique.  Some types are completely debilitating.  Other types are... is it fair to say... a lifelong nuisance in comparison to severe systemic lupus?  I read a very encouraging story about a type of lupus that can go into remission.

There is little I can say for certain about lupus:

It is vicious and merciless to those whom it attacks. 

In the past, those people have remained in the shadows.  In silence.  They deserve to be heard.  They deserve our support in whatever ways their situation calls for.  And they deserve answers. 

There are many questions surrounding lupus. And today -- World Lupus Day -- is about finding those answers.



To learn more about lupus, you may visit www.lupus.org .  You'll find information about the disease and ways to advocate for research and a cure.

If you're the creative type, consider purchasing the All About Hope stamp kit from Unity Stamp Company, currently on sale for $10.  It was designed in honor of Lupus Awareness Month by my uber-talented friend who also designed this logo.  And she's not just my Facebook friend.  I've been to her house for dinner.  Sorry for bragging.