If you do a quick search on Google, the word “rebel” or “rebellious” yields endless images of hardcore punks, defiant teens stepping into flames, or revolutionary figures wielding guns. It’s hard to find pictures of people in wheelchairs or confined to their bed, or a hospital room. For those of us who live with chronic illnesses, rebellion may not look the same, but it is an everyday occurrence.
I live with systemic Lupus, Sjögren’s Syndrome, antiphospholipid syndrome, epilepsy, and a few other chronic illnesses. It is often hard to trace the source, but pain comes in the form of a menu with a long list of choices.
My idea of being a rebel is to go for my own birthday dinner, despite the pounding pain in my muscles from Sjögren’s. Not the feel-good ache post exercise, but the sort that keeps you up all night begging for help. I feel tough when I manage to chop a potato into two and cook my own dinner, with hands that have become inflamed red balloons from Lupus. I feel like I’ve won that hard-earned peanut butter sandwich, which requires me to crawl to the kitchen in order to make it. This is my life, and I’m not about to let a little pain dictate what I can or can’t do.
Things like standing on the bus, taking a shower, or fastening my bra add up at an exponential rate. Pain consumes me by the end of the day. My body needs a week to recover, but I get up and do it all over the next day, with double the amount of pain.
I am the inconspicuous character, with my head down shuffling along the street. I don’t look tough or inspiring, huddled under my blanket. I don’t have the toned body or signature style of a superhero unless you consider pajamas akin to capes and tights. Yet I, and many others like me, am rebelling against feelings of infirmity and depression on a daily basis. I make a conscious decision to interact with society when shutting down could be so much easier. I am defying the constant pain, in order to find some pleasure within my days. I am clinging onto the pinky finger of life, while my body is self-destructing from the inside out.
No, I am not the revolutionary who is going to usher in a new era or stop climate change. I don’t have the energy to join you on a hundred-day strike. I don’t have the strength to rev up that Harley and go riding off into the sunset, hurling my middle finger at society. Whether I like it or not, I am dependent on the system and the boring stuff it provides — doctors, hospitals, and medications.
But I am a rebel in my own way. Have you ever tried clinging on to life when you feel no hope; when you experience pain, no matter what you do; when strangers judge and misunderstand you in a split second on the street? Standing firm and choosing to fight for your life against the odds is the hardest thing to do in this world. And in that sense, every little thing those of us with chronic illness do to thrive and survive kicks some serious ass.