Did you ever wish you could disappear? That you could be like John C. Reilly’s character in Chicago?
Cellophane, Mister Cellophane
Should have been my name, Mister Cellophane
'Cause you can look right through me
Walk right by me and never know I'm there.
Did you wish that when you walk into a room or down the street no one would notice you, no one would bother you, and you could just go about your business? Do you want a cloak of invisibility? How many of you played the game as a child where you choose your super power? Would you rather – be able to fly, have x-ray vision, or be invisible? Did you choose to be invisible? I didn’t. I never wanted x-ray vision, never wanted to be invisible. But I am. I wear a cloak of invisibility…and it isn’t all it’s cracked up to be.
When you have an invisible illness, it feels like no one sees the real you. You’re still you, only slightly different. Chipped, tarnished, damaged goods...only no one can see it unless they look very carefully. You are screaming on the inside to be noticed, to be validated, to feel like someone gets it, gets you. Instead you feel pitied, scrutinized, brushed off, ignored, looked at with a heavy dose of skepticism. On the flip side of that you also get unsolicited advice or stories of someone else who has the exact same illness and died/got cured/lived in horrible pain/never let it get in the way. And you feel like…less. Less. You feel invisible. You feel like a ghost.
No one sees…unless they notice the way your face tightens as you wince in pain. No one sees…unless they notice that you’re walking a little differently or rubbing a sore spot that won’t go away. No one sees…unless they notice that you’re on edge, anxious, fidgety, short-fused. And even if they notice and ask what’s wrong, they still don’t/won’t/can’t see. To them your illness is not real. Seeing is believing.
You talk about it so much to those who do listen that you feel like you’re a nuisance. You apologize for talking about it. You try to make light of the bad days and the illness itself. You seek out support groups of people you don’t know who have the same invisible illness just so you don’t feel alone. You worry you’re driving away the ones you love because you live in an alternate universe, inextricably (and inexplicably) bound to strangers who get it because they have it. You worry someone will find out about your illness and judge you based upon that one piece of you.
How many times have you heard – That’s not a real illness. That’s all in her head. Doctors diagnose that when they don’t really know what’s going on. She’s just a hypochondriac, attention seeking, Munchausen Syndrome having nutjob. She doesn't even look sick!
It’s really easy to pretend when you have an invisible illness. Others expect you to be fine, because they can’t see you, so you try your hardest to be “fine”…for them. When you’re in between flare ups you can sometimes pretend so well as to convince yourself that you are “fine.” You pray that God will allow you to ignore the symptoms if they aren’t going to kill you. You learn your triggers and avoid them, even if they are things you love doing/eating. You have bad days and good days and are constantly grading yourself on a scale of 1 to 10 – How’s Your Pain Today?
Being invisible is exhausting.
You try to explain to those closest to you. You try to raise awareness. You try to manage your symptoms because there is no treatment, you can’t afford the treatment, you can’t get it where you live, you don’t want to fill your body with chemicals… You try to figure out ways to ease your pain and discomfort. You rethink ways of getting through your day and managing what you have to do. Every single twinge you get you wonder, you over-analyze, you mentally assess whether it’s one you’ve felt before or something new. You never stop wondering.
I’ve had a few ongoing invisible illnesses over the last four years. There have been times I thought that I was dying. Literally dying. Not figuratively, not the exaggerated dramatic statement – I’m dying! These illnesses are things that I have learned to live with, deal with, forget about. They have no identity, no known cause, no treatment that works well. So I pray that God will help me to ignore them and live with them in the background rather than in a starring role. I have felt betrayed by my body, and I have had moments of extreme self-pity and rage. Most of the time I only allow myself to feel thankful that it isn’t worse. Someone somewhere has it much worse – the exact same illness/es – and goes on with life as normal. Writing is cathartic. Poetry. Blogs. It helps me. Does it help you?
For now parts of me, parts of who I am, are invisible.
I am a ghost.
I am cellophane.
I am alive, and I am thankful.