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.

Awareness

"But he said you looked fine."

May is Lupus month and today, May 10 is World Lupus Day.  Being bed- and home- bound, there isn't much I can do to raise awareness but I feel that awareness of this disease is needed.  Until I was diagnosed, I have never heard of Lupus or what an autoimmune disease was.  Until I was hospitalized  I did not really understand Lupus.  And it was not until Lupus took away the life I knew, the friends and family I knew, and threatened to take me away, that I finally sat down and started to learn about the disease.  Even so, it is one hard disease to understand.  I mean, what does "Lupus attacked your central nervous system" translate to in one's everyday life?  How can one bring awareness to all the physically debilitating effects of the disease?  And what will awareness do, anyways? For me, it will prevent people from saying "You look great, hang in there."  Innocuous statements like these anger Lupies because it is laden with ignorance that only awareness could shine light on.

Last fall, I was hospitalized after being very sick, for a very long time.  Concerned friends visited with their well wishes.  One of my friends could not come because she was sick herself and instead, sent her boyfriend, who happened to be in the medical field and knew "all about Lupus."  Apparently, he reported to her that I looked fine.  I still think about that.

I think about how when he visited, I must have looked fine.  I was, however, not fine.  I was not fine because before his visit, I had been deliriously ill and comatose for a few days during the hospitalization.  I was not fine because during his visit, at the time that I was conversing and even laughing, I was feeling such intense chest pain that I could not even lie down for any relief.  I was suffering both from high fever and chills that I felt like I was burning naked on top of a freezing iceberg in Antartica.  The headache was so intense that I started to think a drill through my head might relieve the pressure.  I was feeling so dizzy and lightheaded that any movement would make me feel faint.  The nausea was so bad that I felt like vomiting the entire time.  My eyes were bulging and the lights felt too bright.  My ears were ringing so hard that the conversations felt like people were yelling.  I was hungry because I have been unable to eat since my entire mouth was covered with sores, my taste buds were shot, my teeth and gums were sensitive and the skin inside my mouth felt like it was missing a layer.  My entire body felt like a bunch of guys were continuously beating me up and the painkiller I took 10 minutes ago seemed like it was already wearing off.  My stomach was hurting, my digestive system was out of whack and I was suffering from heartburn, gas and diarrhea.  I was numb from the waist down and the only feeling I had down there were feelings of pain.

But I looked just fine.

I hope that with awareness, people will understand that a Lupie could be sitting across from you, looking fine but feeling sicker than one could imagine.  If you have a Lupie in your life, the next time you see him/her, instead of saying "You look so great!" try asking "How is the pain today?"