When Everything Reminds You of Your Chronic Illness
Everyone always says, “Don’t define yourself by your chronic illness,” and while I agree that I am so much more than my illness, it is nearly impossible not to define yourself by the illness that consumes every waking (and sleeping) moment of your existence, plaguing you with painful and uncomfortable symptoms day in and day out.
When you have a chronic illness, you see things in a different light. Suddenly everything becomes about your illness, about the horrible symptoms you have and the deep-seated emotional trauma you may have. Suddenly you don’t hear songs the same way – what once were lyrics with a message of heartache due to the loss of love become songs about heartache due to loss of the ability to live life pain-free/symptom-free. What once was a song about the wildest party becomes a song about an experience you will never have. Songs about being in love become reminders of how single you are and how you feel like you’ll never find love due to your chronic illness.
I also see myself in the characters I watch, for example, in Disney movies. I am Quasimodo from “The Hunchback of Notre Dame,” disfigured and yearning to be “out there” among people living life normally, knowing if I were them I would “treasure every instant.” I am the Beast from “Beauty and the Beast,” trapped in a body I was forced into, yearning to be set free and feeling like no one will ever love me. I am simultaneously Anna and Elsa from “Frozen.” Anna has been trapped living alone, while Elsa is afraid of her body, trying to come to terms with it and pushing away those closest to her. I am Rapunzel from “Tangled,” trapped in a tower all alone, doing everything I can to fill my days with whatever meaningless hobby I can get my hands on and wondering, “When will my life begin?” The list goes on and on. I see myself somewhere or I see something to do with chronic illness in every show or movie I watch, in every book I read, regardless of the topic.
Chronic illness touches every part of my life whether I want it to or not. I have to constantly remind myself that I am not my illness even though my life is inevitably defined by said chronic illness. In these cases, while stuck being defined by my pain and other symptoms, I can take back that definition and rewrite it. Instead of feeling weak for being defined by my chronic illness, I choose to be strong in that definition. If it wasn’t for my chronic illness I would not be the person I am today, I would not be nearly as strong or nearly as prepared for the hardships that life inevitably throws our way. If not for my chronic illness I wouldn’t be as empathetic or as caring. If not for my chronic illness I would not have discovered my talent for writing poetry which has become one of my greatest passions.
It is not bad to define yourself by your chronic illness if that definition simply means you are an incredibly strong, kind and caring person. So yes, I am defined by my chronic illness. I am the strength that comes with it, but I am much more.
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Thinkstock photo via Popartic.
Heather Danielle Ashley is a poet and the author of “The Bright Side of Dark: Collected Poems.” She has Ehlers-Danlos syndrome, Chiari malformation, POTS, and mast cell activation disorder. She taps into her pain, using it in her writing with the hopes that through her poetry she can raise awareness about what it is really like living with a chronic illness. You can follow her on Instagram @morethanmyillness and check out her chronic illness blog http://heatherdashley.wixsite.com/thethingwithfeathers.
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