My Story of Narcolepsy
When you hear the word Narcolepsy, what do you think of? Although not very common (there are approximately 30, 000 narcoleptic people in the UK), narcolepsy has one very obvious symptom - uncontrollably falling asleep. Therefore, you would assume that the process for getting diagnosed and treated is pretty straight forward. Unfortunately for me, this was not the case and I thought I would share the journey of my alter-ego, Narcoleptic Nancy with you. It is a tale of triumph and defeat, of shame and glory, where many tears are shed and many naps are had.
In 2007 I had myself a gap year. I must stress that my version of a gap year was less searching for myself whilst backpacking through Asia, and more searching the pubs of Oxford for the cheapest gin and tonic. Despite my night time antics, I was usually fairly chipper for my weekly Saturday morning driving lesson and my instructor was a pretty laid back guy. However one day he asked me to pull over and to turn off the ignition, before telling me that I had been falling asleep at the wheel. I employed the typical teenage revolving door of excuses - I was squinting because the sun got in my eyes; I thought I saw a hummingbird in the distance; Maybe you fell asleep and just dreamt it! I was in serious denial, and whilst I batted away his words of warning, my undiagnosed neurological disorder was just getting warmed up.
Cut to two years later, and I am halfway through my theatre course at Coventry University. Although the partying is still at an admirable level, I am also spending a lot of time cuddled up on the sofa watching bad Saturday night TV with my housemates. I develop an interesting reputation for napping in strange places around the house, wrapped up in my ugly old dressing gown. They would take photos and we would joke about it, but deep down I felt a little violated and totally confused. I was not the biggest party girl by far, so why was no one else falling asleep during the ‘Strictly Come Dancing Finale’? Attending class was also becoming an issue, especially after a lengthy lecture when I would read my notes back and they were totally incoherent and illegible. If I wasn’t actively participating in rehearsals, I would start to feel as if I were falling in slow motion into a pit of sticky syrup, completely unable to stop myself.
By final year I was exhausted and simply couldn’t cope anymore. I made my first appointment with a local doctor and marched in with high hopes of getting this all straightened out, because that’s what doctors do - they make you better. The result was not good, because he presumed I was a student who stayed up too late and didn’t take proper care of myself. He didn’t deem my behaviour unusual at all. I figured that he was probably right. I was sure that once I graduated and became a fully fledged adult, I would automatically sleep better, drink less and start wearing sensible footwear.
Over the next three years I must have tried six different doctors and heard a lot of infuriating and useless responses:
“It is probably because you’re vegetarian.”
“Katie, sometimes people just get tired”.
“I know what’s wrong - Insomnia! Here’s a pamphlet, enjoy!”.
But the worst one I ever got was, ‘Well, you keep coming back here and I don’t know what you want me to do….. What do you want from me?’ That time I barely made it out the door before I burst into tears. And it wasn’t just a cute little sob, it was the kind that makes your face go all red and crumpled, and you immediately snot everywhere.
So I just lived with it, I took naps in the public toilets at work, I kipped in the canteen and one time I fell asleep whilst standing up and leaning against a wall! It crushed me every time it happened, like I had uncontrollably wet my pants and just had to accept that this is what happens to me and everybody knows about it.
Finally in 2016 I made some progress after living in Bristol for nearly three years. After taking a hiatus from my investigation I wanted to end this, once and for all. This time however I tried a new tactic, I told the doctor that I really wanted to start driving and needed to make sure I wasn’t narcoleptic…. Because that could be dangerous. The doc looked startled and said she would refer me to the Sleep Unit as soon as she could - I literally wept for joy. After nearly ten years I had achieved step one, and all it took was a simple empty threat!
We were off to the races, however the road ahead was long with many delays, diversions and bumps in the road. I was offered appointment after appointment and they kept getting cancelled. One appointment got cancelled whilst I was half way through the observation, and I got sent home in the middle of the night covered in medical adhesive! I had to endure wires being glued to my scalp, uncomfortable beds and full days spent in hospital taking naps on command.
Even after I had successfully completed the required tests, I was passed onto the Neurology Department at Southmead for even more tests! Spoiler alert, it was exactly the same, the wires, the boredom, the beds that seemed to be made of rocks. One thing I did take away from this experience is that peeing into a cardboard bowl is much more tricky than it sounds! During my stay I noticed a young girl with the same excessive wiring as me, so I asked her what she was in for. She tells me about her struggles with fatigue at university and how she is afraid she won’t pass her course - It all sounded very familiar to me. I smiled and reassured her that she is lucky to get treatment so soon after her symptoms started. She seemed to take comfort in this, and I hope she got the help she needed quicker than I did.
Now it’s three months later (keep up people), and I am back in the specialist's office. After 5 minutes of silence and tapping at the computer, she spins around on her chair and rather flippantly states, ‘Yes you have Narcolepsy. You know it cannot be cured, right?’ After ten years of fighting this is how it ended, with less of a bang and more of a face slap with a cold, dead fish. Everyone I knew cheered when I told them, patting me on the back asking how good that must have felt. But I didn’t feel relieved or pleased, I just felt… furious. I had known all of this information for the past ten years, and no one had listened. The doctors I went to for help made assumptions based on my age, appearance and lifestyle choices. I felt like running back to all of them individually with a megaphone and my diagnosis letter, screaming, “COME OUT WITH YOUR HANDS UP! YOU ARE UNDER ARREST FOR BEING A RUBBISH DOCTOR - PUT YOUR DIPLOMAS WHERE I CAN SEE THEM!”
I do not want this piece to come off as a diss to doctors or a knock down to the NHS - they do incredible work, they save lives and we are privileged to have affordable health care for anybody who needs it. I am merely coming to you with this message - do not wholeheartedly depend on the people known to you as the holders of knowledge. Teachers are not always right, politicians are rarely right and doctors are not always correct either.
Having said this, I am NOT giving you permission to google every symptom you’ve ever had and insist to your GP that you have Ebola and The Black Plague. But if you are certain that there is something wrong, fight until you get your answer otherwise you might be swept under the rug and forgotten about. If I could travel back in time to visit my teenage self I would tell her many things, like stop cutting your hair short and for the love of God, draw on your eyebrows girl! More importantly, I would tell her to keep trying even though it hurts so badly each time she is swatted aside. Keep badgering these GPS for a referral and not a diagnosis - it is not in their field of expertise.
How am I now? Well, thanks for asking. I am now on medication that helps me, but I still have bad days. The difference being that those bad days are not every day, and I no longer live in fear and anticipation of my sleepy spells. When I consider that I lived for a whole decade without anything to support my condition and I still worked, and played and lived independently, I realise what a badass I am! If Narcoleptic Nancy was a superhero, she would be a mixture of Tank Girl, Athena Goddess of War and Snorlax - who wouldn’t want to read a comic about her? I know I would!
Written by Katie McFaul
After travelling from place to place (much like Madonna in ‘Desperately Seeking Susan’), Katie finally settled in Bristol and spends her time helping animals in need, eating biscuits and constantly being late for everything. Her likes include vegan cuisine, movies of any description and writing god awful poetry. Her dislikes include slow walkers, narrowmindedness and talking about herself in the third person.