My house could pass as a shelter for wayward footwear. In the shoe rack by my front door sit shiny coral heels, blue and white striped peep toes, leather boots with metal hardware, black ballet flats, red pumps- many of them scuffed because I hate to throw out any shoe that has carried me someplace interesting.
Like most American women in their twenties, I am an enthusiastic participant in a culture that encourages me to drape myself in textiles, stick shiny ornaments into holes in my ears, and swipe various pigments across my face before heading out into the world. As much as we like to believe otherwise, we are a culture that judges based on appearance, and it’s unlikely that will ever change.
Many of the assumptions people make after glancing at me are correct. I’m college educated and middle class. My smile radiates that special mix of gentleness and don’t-you-dare-throw-a-tantrum-ness that pegs me as a teacher. I think yoga is a good workout. My love for Starbucks is pure and true and will no doubt last for all eternity.
But the one thing nobody ever guesses after meeting me is the one thing that has the most control over my life, which is that I’m sick. Not sick as in “I caught the flu and I’ll be in bed binge watching Game of Thrones surrounded by tissues,” but actual disease sick. For the past eight years, I’ve lived with lupus, a chronic illness.
Lupus is an autoimmune disease. Visualize the cells that make up your immune system as a well trained army ready to attack foreign germs and bacteria. Now imagine that that army is confused, undisciplined, possibly even hungover after a crazy night out that they don’t completely remember. Your confused immune system beats up on your kidneys, your joints, your nervous system, all the while letting dangerous germs slip past. That’s lupus.
Lupus is a little different for everyone. For me, living with a lupus means that I’m frequently exhausted, often on a daily basis. Twice, my disease has gotten out of control with life-threatening consequences.
This blog is about my everyday life with an invisible illness. It’s about the disorientation of looking one way but feeling another. It’s about not being who everyone assumes you are. It’s about having challenges in your life but choosing to live and love anyway.
Don’t know what it’s like living with a hidden illness? Take a walk in my shoes.