Why I Write About Ehlers-Danlos Syndrome
I am a writer and a published poet. Writing is very therapeutic. I write poetry based on my experiences with Ehlers-Danlos syndrome. On the days that I don’t write I feel slightly off. It is a fantastic and cheap form of therapy. I write articles about my battle with chronic illness for this exact same reason.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
When I was a teenager, doctors told me that I was making up all of my symptoms for attention. I didn’t stand up for myself, I am not good at doing that verbally. I remember wishing I could tell the doctor everything I was thinking, how worthless that they made me feel, but the words just wouldn’t come out. So I meagerly let doctors tell me these things and it has become a bad habit. I often find it hard to express how I am feeling verbally, I am a very shy person, and frankly, I am a person who let’s people walk all over her. I wish I wasn’t this way, but I am. This is why I write.
When I write all the words that have been begging to be spoken, they come out either in the form of poetry or as an confessional type of article. When I write I am not a meager person, but a person who can stand up for herself as well as others. When I write I am able to clearly and concisely convey what I am feeling and exactly why I am feeling it. I am courageous and strong in my writing, truly passionate about my battle with Ehlers-Danlos syndrome.
It is my hope that with my writing I can not only stand up for myself, but stand up for every other person battling Ehlers-Danlos syndrome or any type of chronic illness. My voice booms loudly as written word. I wish I could say aloud half of the things I say in my writing. I wish I could be less meager when doctors tell me something that is clearly wrong, or when anyone does or says something about Ehlers-Danlos syndrome that strikes a nerve with me. I know that I am never going to be able to say all of the things that I can so easily write, so I will do the only thing I know how to do, I will let my writing speak for itself.
Thinkstock Image By: LuckyTD
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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