Tired of Narcolepsy

It first happened sometime during the summer of 2010, during the last lesson of the day. I had my eyes down as I was reading Macbeth in English; the teacher was reading out loud to us all. After a while, my eyes felt heavy, I couldn’t keep them open. The words on the page became suddenly jumbled up. Eventually, the feeling passed and thought nothing of it. I just assumed I was sleepy from being in school all day.

Yet after that, it happened more often, once a blue moon, monthly, weekly and daily. That was when I was 14 years old. I had GCSEs to revise for and exams to do. I would go school, feel drowsy during classes and on the bus home, then fall on my bed exhausted at the end of the day. I don’t really know how I coped. But I did.

For the next three years, I'd attend several doctors appointments. No one knew what was wrong with me. At first I was told good ol' puberty was to blame. Next, I had blood tests which resulted in me being anaemic, but it soon became obvious that wasn't the source of my tiredness.

I was drawing unwanted attention to myself, as I was getting stared on the bus, told off by teachers in school; even my own family had no clue how to act around me. I was even too tired to stay out all day, which would cause my mum to get frustrated with me: "I'm twice your age and I'm fine!" That would be the common line she would use. Yet no one was more frustrated with me than myself.

I felt like I had lost who I used to be. I took feeling awake for granted. When I seen girls my age in groups, able to stay up all night and enjoy themselves, I envied them, I saw my past self in them, the girl I felt I was no longer anymore. I had my whole life ahead of me, nothing stopping me, but in that moment it felt like a brick wall was blocking my path.

One day, during the last year of high school, I sat in the school library googling my symptoms. The doctors were clueless, so I was determined to figure this out myself.

I came across a forum of people discussing feeling sleepy even when they had a good night's sleep. Then, I found the word ‘Narcolepsy.’ I copied and pasted the word, and I found a medical website that explained what it was and the symptoms. After much research, I was relieved from my insanity.

Narcolepsy is a rare sleeping disorder that causes patients to fall asleep at inappropriate times, and 70 percent of patients developed a condition called cataplexy, the loss of muscle control triggered by strong emotions. I had also been experiencing that, which made my social life even trickier, especially being a teenager wanting to be fit in. I watched a video of a girl talking about her experiences and it was the first time that I thought, ‘she’s like me.’ I printed it off and showed my friend. I never felt more relieved. I rushed home to show my mum and even she was surprised; neither of us had even heard of it before.

The irony of this story was when I asked my doctor if it could be narcolepsy, he said no. He was later proved wrong when I went to have a sleep study and the results were positive!

The weird thing is, even after being diagnosed, I thought everything would go back to the way it was, but that’s not how it turned out. I felt isolated; my mum was still trying to come to terms to accept my condition and not telling me off for it instead.

I felt like my tiredness was getting worse, and I was starting college. I didn’t even get diagnosed until after Christmas, so I had to try to pay attention in class and hope the teacher wouldn't think I was being rude.

It was horrible. Once a wave of tiredness hit me, there was nothing I could do to prevent it, sitting in a room for over an hour, staring at a board, with only the teacher talking; this meant I was prone to drifting off. Sitting on a train after a long day, I’d feel my eyes grow heavier. Even watching TV in the middle of the afternoon, even if it was my favourite show, my body would just turn off and create anywhere I was sat a cushioned cloud.

During college, half a year after my diagnosis, I was sat in the library, on the verge of sleep, staring out the window at the students rushing about to get to class. Full of energy to run to class, to study and revise. I felt like everyone had an advantage over me while I was being left behind, struggling to keep up, just about maintaining average grades and still being told ‘I could do better.’

It felt like nobody understood. I was alone; my friends would nod and sympathise, but no one knew what to say. I couldn’t blame them. There was nothing else anyone could do. In my mind, I had already accepted that I wouldn’t cope at university, no one would ever want to date me, and I would feel like this for the rest of my life. I was in quite a dark place and could see any hope for the future.

Until I found a book called Wide Awake and Dreaming by Julie Flygare. For the first time, I had discovered someone with narcolepsy who persevered and went on to be successful. Also, not longer after, I discovered there was an online community on Tumblr, where others would share experiences and advice. For the first time in three years I didn’t feel alone.

Years later, I went on to go to a narcolepsy conference, which I had put off for a while, due to feeling like an outsider for a while. It was my first ever one, and I was happy to make friends. It felt reassuring be in a room with people who all have had similar experiences.

I even graduated from university, had multiples relationships, and even got a job—part-time, of course.

I have grown beyond my narcolepsy. I no longer let it hold me down like shackles. I no longer see narcolepsy as a disadvantage.

It’s helped me be a more empathic person to others who have their own invisible illnesses, and to raise awareness and educate those who are not familar with it.

I won’t let narcolepsy stop me from living my life. I just have to work around it and carry on.