May 10 marks World Lupus Day (*insert confetti here*) and this morning Mas totally randomly stumbled on a paper I drafted for a scholarship application in college about my life with Lupus (or Lupie, if we're getting friendly). Weird coinkydink, no?
My Life with Lupie
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.
Plans to break off my relationship with Lupie flooded my mind, but I knew Lupie’s permanence was undeniable. Riddled with confusion, I sat silently contemplating, when out of the corner of my eye I caught my reflection in the window. I felt Lupie’s strong presence and wanted to look away, but I stared; for the first time I was accepting of my life with Lupie.
In my moment of acceptance, Lupie’s role in my life shifted. Lupie no longer existed as an outside entity restricting my ambitions. My moment of vulnerability on the day I encountered Lupie in the doctor’s office manifested a controlling alter-ego overriding my spirit. Through my determination for full self-acceptance I can now expose Lupie’s true existence as Systemic Lupus. Lupus challenges my emotional perseverance and physical strength every day, but Lupus will never again control my spirit. Living with Lupus has changed my life in countless ways; I choose to look at the positive side and work from there. We all have a choice to either control our lives, or let something control it for us. I choose to take control of my life, even though Lupus, or Lupie, will always be a part of it.
I teared up reading this, knowing the health battles I have won (and maybe realizing how much I loved dramatic adjectives back in the day). I'm one of the lucky friends of Lupie whose disease is under control, but I'm hopeful that one day science will allow me to unfriend Lupie for good.