Fuck you, Narcolepsy. You pin me to my bed, suffocating beneath my once cozy blankets and unable to cry out for help. You tell me lies of thunderstorms, events and even entire days, only to find I haven’t left my bed. You leave me feeling isolated from dear friends, and force me to live a secret life from my colleagues. The mental fog you cast over me by 11 a.m. leaves me unable to keep up with lectures, conversations with peers, and makes me look downright stupid to professors. I waste vacations with friends napping instead of enjoying their company. Everything from what and when I can eat, to when I can drive, to when I MUST be in bed is dictated by medication. You inspire rage within me instead of compassion when I hear a friend complain of being “sooo tired you don’t even know,” or an elbow injured in the gym. I used to lift. Now cataplexy scares me away from the weight room, and even a jog around the block. I will never recover from narcolepsy, so hearing about your frustration from an injury that will heal with rest is absolutely maddening.
My illness is as common and debilitating as MS, but is the butt of jokes. It is misunderstood even among healthcare providers. We do not fall asleep in our soup. We are as sleepy as a normal individual would be after three days of total sleep deprivation. We are not stupid. We are not lazy. It is not a psychiatric condition, part of my hypothalamus has been destroyed by my own immune system.
Tomorrow I will have to sit through a lecture about my condition, presenting information that is flat out wrong. The author of our textbook makes outrageous claims without any citations. I want to change the healthcare system from the inside out, but to keep my spot in the program I must bite my tongue and regurgitate this bullshit the graduate and get my license.
I have to explain my condition to doctors, the insurance company, and that pharm tech at CVS who gives me weird looks when I come in for yet another prescriptions that I know will need prior authorization.