When I try to think of how this disease has affected my life I honestly don’t know where to start. I was diagnosed with narcolepsy and cataplexy in the seventh grade. I was lucky that I was diagnosed within the first year of showing symptoms of cataplexy. And have been on a stable mix of medications that keep my symptoms under control since high school. But despite my early age of being diagnosed, I have always struggled with being ashamed of my disease and self acceptance of myself as a narcoleptic.
As I have gotten older and more independent the impact this disease has on my life has really become noticeable. I am now 27, work full time as a special education teacher and take graduate classes online. Each day, I fight to find the energy to do the simplest things- drive, work, grocery shop, clean my apartment. Never mind do my graduate assignments, paperwork for work, have a social life, and date. Sometimes I feel like I am on the verge of drowning but continue to push myself to keep my head above the water. Most people that know me have no idea or forget that I have this disease. And because of my embarassment I rarely talk about my disease. In fact, I have worked hard to hide it from most people. They have no idea that when I laugh too hard I go paralyzed. They would be shocked to know I take a nightly medication that causes me to sleep walk and eat in my sleep – but that it keeps my cataplexy (causes the paralysis) under control, so I have made the choice to choose the lesser of the two evils and eat at night in my sleep. No one knows that the cataplexy makes it really challenging to excercise because I get light headed and dizzy. Or that at night I have terrifying nightmares, sleep paralysis and hallucinations. They don’t know why my knees buckle and my tongue pushes my front lips forward when I am nervous due to the cataplexy. Many would be surprised to learn I have fallen asleep behind the wheel at a red light, writing notes home to parents, or eating.
Just recently, I have started to open up to some of my family, friends, and coworkers about my disease. And I am lucky that they have been as understanding and supportive as they can be. They may think that I just need a nap everyday because I get sleepy and do that funny thing when I laugh. And they might not have any idea of the daily challenges, embarassment, and obstacles that I face. But they have taught me that it is okay to tell them when I need help and when I am not feeling my best. They have helped me take a step closer to accepting myself as a narcoleptic and being at peace with who I am.
Becca lives with narcolepsy. The symptoms of this incurable disorder include: falling asleep unexpectedly, extreme sleepiness throughout the day, disrupted sleep during the night, sudden loss of muscle control and even hallucinations.
But the impact of narcolepsy in daily life reaches far beyond these symptoms.