Invisible

Lupus is an invisible disease.  

Aside from possible skin rashes, bruises, hair and weight loss, all the symptoms of Lupus are invisible.  During my worst days, it really puzzled me how my friends and relatives would ask how I was doing.  After all, I wondered, could they not see that I am NOT ok.  Why would they even ask?

But the thing is, looking back at my pictures, I would not be able to tell that I was really sick just by my outside appearance.  Aside from subtle changes (glazed eyes, pale lips, forced smile, etc.), one cannot tell what is going on inside.  In picture 1, I was Lupus free.  Comparing this to pictures 2 and 3, there isn't a huge difference.  

In picture 2, I lost so much weight, especially in my legs, that walking was becoming really difficult. The night before this picture was taken, I was up all night because of the pain.  But in this picture, I look like a thin, proud mother, enjoying her Fourth of July on the beach.

In picture 3, I was in so much pain that it's too numerous to name all the symptoms here.  What you cannot tell from the picture is that without assistance, I was barely able to walk or get up from the couch that this picture was taken.  I was still pretty delirious and breathing was really difficult.  I had gained lots of weight because of prednisone.  I had cut my hair short because I lost most of it to chemo, prednisone and Lupus.  I was covered up to hide the rashes, bruises and random cuts in my body. But in this picture, I look like a chubby mother, enjoying a nice day with my family.

Picture 1: Six months before my first flare and diagnosis of Lupus.

Picture 2: During a Lupus flare

Picture 3: During the "Big Flare"

I guess though, what does it mean to look sick?

And why does it matter anyways?  Who cares whether you look sick or not.  Isn't it better not to look sick?

The difficulties from living with a raging disease that is completely invisible comes from many fronts -- from those close to you, who do not understand how sick you are and to the waiters, who do not understand why you cannot take the stairs to the second floor bathroom.  More on these difficulties later.