I Shouldn't Be Embarrassed That My Life Is Ruled By Ehlers-Danlos Syndrome
I am embarrassed by my life. I am 25 years old and I still live with my mother. I still depend on her to drive me everywhere because I can’t drive myself. I depend on her to support me financially because I cannot work and support myself. I wasn’t able to finish college because the pain and other symptoms associated with Ehlers-Danlos syndrome and Chiari malformation became too much to handle. I spent three years trying my hardest to make it through college — the grades were never my problem, it was the fact that I often was too ill to make it to class, or the brain fog set in, making it too hard for me to finish homework. I think in all of those years I only successfully made it through one semester, and that was by the skin of my teeth. I feel like a failure, like I am less than everyone else because I don’t have that piece of paper. I know logically that it is my body that failed me, not my mind, but it is my mind that keeps telling me I am a screwup.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
I can’t work for the same reasons I couldn’t finish college. People often say they wish they didn’t have to work and that they wish they had all the free time in the world. I know people must think I am lucky in this regard, but trust me I am not lucky. I would give anything to work, to actually have something to contribute to society; instead I wake up each morning with no purpose, trying to find things to fill all of my free time, having to take into account the pain I am feeling or the limitations of my body on any given day. It is not a life I would wish on anyone. I feel like I am stuck in purgatory, neither here nor there.
I hate when I can physically see someone’s pity and/or judgement on their face. Their accusing looks make me feel like I should be ashamed of my life, as if I have done something wrong. But I have done nothing wrong. I have nothing to be ashamed of. If anything, I have a lot to be proud of. I face intense and unrelenting pain every single day of my life and I still keep a positive outlook. If that is not something to be proud of then I don’t know what is.
I wish I could tell everyone that my life is not the life I choose, but it is the life I have. I wish I could tell people that they don’t have to feel bad for me and that I don’t want them to. I want people to treat me as if I am a regular person, and not focus on the medical problems or the fact that I have to do things differently. I don’t want to be embarrassed anymore. I don’t want to feel ashamed of depending on others. I don’t want to be pitied or for people to feel bad for me. I just want to live the best life I can under my circumstance and I don’t want to be made to feel less than because my life is not like the typical person my age.
Lead photo by Thinkstock Images.
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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