Educate Yourself: World Lupus Day May 10th

May 10, 2011 No Comments by Tom Krieglstein

For most, today is Tuesday, May 10th. For 1.5 million Americans plus their family and friends, today is World Lupus Day. Lupus is often known as the silent killer because it is vastly under funded, reported, and treated. Lupus is a complicated autoimmune disease in which the immune system attacks a person’s own cells and tissues along with a plethora of additional side effects. There is no conclusion on how one gets Lupus and there is no single test for diagnosis. For those living with Lupus, which is 90% women, it’s something they’ve learned to live and deal with on their own terms.

My wife Annie has Lupus and has lived bravely with it since 2000. Today, while searching for a work related computer file, I randomly stumbled on a paper she wrote in college about her life with Lupus. In honor of World Lupus Day, please educate yourself about the disease and read Annie’s full essay below…

My Life with Lupie@AnnieColbert

I felt like a dork, standing nearly naked, only wearing mismatched socks and a paper gown, battling unsuccessfully with the plastic “belt“ to cover as much of my winter-white pale skin as possible. I hate paper gowns. If sitting in a doctor’s office does not make you feel uncomfortable enough, the gown will surely increase your anxiety. In all of my vulnerability and uneasiness of the moment, the doctor unexpectedly introduced me to my new friend Lupie. The beginning of our tumultuous relationship lacked an instantaneous bond. At seventeen, years of chronic illness already weakened my physical strength and my mental strength drained when Lupie arrived. Lupie possessed an amazing presence and intimidating strength, yet was quiet and mischievous.

Our constant companionship and Lupie’s desire for social isolation led to inevitable personality clashes, as I prefer social interactions. Early mornings sparked our most hostile confrontations. Lupie drowsily laid in bed, eager to sleep the day away despite my stubborn insistence to be active. Our confrontations tested my physical prowess, and often brought me to a state filled with shooting pains stabbing at my joints. I would lay in such pain that my only motion was to wipe the tears streaming down my feverish face. I triumphed occasionally, dragging Lupie around with me to school, but Lupie and I soon realized the lacking compassion expressed by students and administrators made our attendance unwelcome. Lupie’s introduction to my other friends garnered disparaging reactions ranging from complete disregard to harsh criticisms. Ridiculing comments concerning my dependence on Lupie faltered my attempts for a ‘normal’ high school experience. Lupie and I were alone.

Continue reading on her blog…