Step Right Up (But Don't Expect Me To Smile)

 

If chronic illness had a theme, it would be a circus—loud, chaotic, and somehow always demanding a performance.

The difference is… I’m not here to entertain anyone anymore.

Ok, so, what’s it like living from one diagnosis to another? Terrifying actually. Like watching every last flying monkey escape and head your way on doomsday. It’s a day to day walk through fire, crossing the high wire. You know, barely making it out of the tiger cage alive only to realize you’re caught up in the clown show and everyone's looking at your bad day like a freak show. 

That’s the world outside the actual tent. To those inside, like my endocrinologist, cardiologist, rheumatologist, nephrologist, pulmonologist, neurologist, hematologist/ oncologist, ENT Immunologist, ophthalmologist, sleep specialist, PCP and yes, my psychiatrist, I’m just me, Christina. A 52-year-old mother, wife, daughter and average woman trying to beat back the lions nipping at my heels. My medical records say I’m a patient living with type 1 diabetes, kidney disease, systemic vasculitis, Parkinson’s REM disorder, heart failure and multiple other chronic illnesses. A woman with a history of breast cancer, 21 surgeries, using an insulin pump, and a list of 28 different medications and counting.

It’s a horror show some days, but this is the thing. I’m not a clown show. I’m not a freak. My illness is not who I am. It’s not what makes me tick either. I am NOTHING my illnesses, but my ill health is part of me. It takes courage to be honest and admit I can’t do this alone. It’s hard to ask for help and to slow down. Those of us battling chronic illness aren’t staging drama or a way to get one over on you. We don’t want sympathy. We’re simply trying to live through another day. 

Look, spoonie life is an emotional roller coaster. A run down, creaky old roller coaster to be exact kind of life. There’s no big top entry. I live inside a three-ring circus. I do. It’s a fact. But I’m not a side show. I don’t travel around putting up billboards and offering early entry to the main event. There’re no tickets or souvenirs to buy. No pictures or peanuts being sold on the sidelines. There’s not even a best seat in the house. Most days I grab whatever chair I can find that’s comfortable. What I do have though is an abundance of real life. A safe place for friendship and understanding. A quiet place to be open and honest with my family about everything spinning on the merry go round at once. You know things like being sick, living life and yes, dying. My circus is my home, with quite honestly a lot of chaos going on, but a home, nonetheless. 

So, the next time a friend or family member with chronic illness shares with you. Or invites you into their safe place, remember it took courage for them to trust you. And if you roll your eyes, or whisper something about drama, or suggest they’re looking for attention as you’re walking away, remember it's your fear speaking out loud, not your courage talking.

~ Christina