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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.

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.

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