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Alone, Undiagnosed, Afraid, and Needing Advice

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I am lonely. As far as I know, I am the only person in the world with my symptoms. I’ve spent everyday of the last five years living with crippling abdominal pain and nausea, which, on the worst days, renders me unable to eat or drink. My gut feels like I’ve spent every single day sown into a corset, tightened more and more every day, until it forms a vice, ripping my intestines apart, seam by seam. I’m scared to get out of bed every morning, knowing that, as soon as I stand, it will somehow be worse than it was when I went to sleep the night before.

Yet, I go to school in San Francisco, and attend classes for twelve hours a day.I take the 6:50 train, I board 7:36 the bus, I walk the half mile. I refuse to take the school offered shuttle. I refuse to let my concerned friends carry my bags. I’m afraid of giving in. I’m afraid of giving into the unnamed creature who has dug his nails into my stomach for the last five years, ripping my mettle and spirit apart. I want to deny that he is real, since he somehow manages to evade a name, every time a brave doctor, nurse, or student tries to find him.

He’s cruel and paradoxical. He saps my energy, gnawing at my appetite, waking me up screaming in the night, like some child’s nightmare brought to life. I wish I could just see his face, for a moment, so I knew what he looked like, so I could identify him. But he has no face, only a series of ever-changing symptomatic masks. He frightens me. I’m afraid that he’ll somehow end up killing me, by starving me to death or driving me to madness, and I don’t what to die. I don’t want to live my life afraid of my own demise – as someone with cerebral palsy, who plans to go to university, I’ve got enough to worry about.

I find it worrisome that my friends now worry about me. I’ve hidden him so well, for so long, but now, he’s made every step more difficult. He’s made my limbs shake, and my mind flurry in an eternal fog of hunger-laced confusion. While I was in Israel last year, for my Junior year trip, he knocked all my energy out of me, and kept me confined to a bus, crying at one in the morning. My friends, many of whom I’ve known since primary school, had never seen me cry before – had never seen me forced to succumb to anything. They had never seen me with fear in my eyes. I think that was the first time I was legitimately afraid that I might die – thousands of miles away from my family, in the Jewish homeland, speaking in a tongue I am uncomfortable with – feeling totally alone and defeated.

I don’t know what to do. I’m writing this because I need advice. I don’t want to spend the rest of my life in the limbo of the undiagnosed and afraid. What advice do you have to give?

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Photo by Antonuk

Originally published: October 20, 2016
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