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. 

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.

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