~ Looks are Deceiving ~

If you or someone you know has a chronic illness (Lupus, RA, Fibro, etc), at one point or another you will come across hearing about "spoons", "sending extra spoons", or "I've used up my spoons". These terms came to us from an inspirational woman by the name of Christine Miserandino. Christine wrote "The Spoon Theory" http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/. In her writing(s) she talks about how healthy people take things for granted and can do daily things that chronically ill people can't. Chronically ill (Lupus, RA, Fibro, etc)  people tend to get tired quicker and ache more. The more a chronically ill (Lupus, RA, Fibro, etc) person does the more spoons that person looses (energy, fatigue, pain, etc...).

When referring to "sending extra spoons"; this term is used when a support person is empathic and cares for another person and wants a chronically ill person (Lupus, RA, Fibro, etc) to feel better. Unfortunately a person who has used up all of their spoons can't borrow spoons from the next day. When all the spoons have been used up, from a particular day/event, the chronically ill person is in terrible pain and generally is paying for the activities they have done. 

There is a great misconception about people with Lupus or any other form of an invisible disease and that is "you don't look sick". A chronically ill person doesn't necessarily have to look sick to actually be sick. "You" Can't See Lupus or many other autoimmune diseases so we need to educate individual people on this fact. Some lupus people may have Discoid lupus or the Malar rash, and that may be visible. But that person may also wear make-up to cover it up so that too may be invisible to the naked eye. 

                                                                               Malar Rash

Discoid Lupus (DLE) is a chronic skin condition of sores with inflammation and scarring favoring the face, ears, and scalp and at times on other body areas. These lesions develop as a red, inflamed patch with a scaling and crusty appearance. The center areas may appear lighter in color with a rim darker than the normal skin.


Discoid lupus erythematosus can be divided into localized, generalized and childhood discoid lupus erythematosus. This too may also be covered up by make-up so it may not be visible to the naked eye.

                                                                                                        ^{Discoid Lupus}

People with Lupus aren't always the same. Some people need canes to walk, wheel chairs, and some people don't need assistance to walk at all. Visible versus invisible illness.

On the days that I'm well enough, I drive my children to school. I refuse to leave the house without make-up or doing my hair; therefore I look good! I'm still sick, and I'm still in pain. But, that doesn't mean I'm not sick. Looks are deceiving.

Lupus can affect any part of the body or the organ of the body. For me, it also affects the Central Nervous System. At times this can be problematic when my brain and mouth don't connect and the brain thinks one thing and my mouth says another. It can become quite irritating when people that say they care and love you laugh at you even though they know your condition. Again, this is part of the invisible illness.

I had one family member say to me, "You're always laughing and smiling, you don't seem so sick to me". My reply was, "if I didn't laugh and smile I'd be sitting in a corner with my knees to my chest, rocking back and forth crying hysterically". "I choose to be laughing and smiling".

We make our choices in life. I didn't choose to have Lupus, that choice wasn't made for me. The choices that I can control, like making the best out of my days as life is too short, smiling, laughing; those I will make the best of. I will not let Lupus control me or my life; anymore.