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What is narcolepsy? One woman shares her story of living with the neurological disorder

What is it like living with an narcolepsy, a neurological condition that can make you fall asleep at the drop of a hat? Here, a woman who lives with both narcolepsy and cataplexy shares her story.

There are two things you should never say to someone who tells you they have narcolepsy: ‘oh, I think I might have that!’ and ‘you’re so lucky to be able to fall asleep anytime you want!’

Let me be clear: neither of these statements are true. I understand that people are keen to try and deflect the awkwardness of the moment with humour, because we’re all really bad at responding to people who open up about their vulnerabilities. And narcolepsy has, for as long as it’s been in the public consciousness, been the absolute butt of the joke. People with narcolepsy are either portrayed as slapstick extremes, like the Narcoleptic Argentinian in Moulin Rouge, or the term is used as a joke, in the same way that people sometimes say ‘oh, I’m so OCD!’, as if it’s just a funny little quirk and not a total bloody nightmare to live with.

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When I was a teenager, I was always the joker. I loved performing – not just amongst my friends, but on stage and in debates at school. But when I was 14, something strange started happening. When I laughed, I’d feel my knees begin to buckle beneath me. In fact, experiencing any strong emotion would cause my muscles to start to ‘go to sleep’, ranging from a loss of control of my voice and facial muscles, to a full body collapse. This is known as cataplexy.

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Narcolepsy: Katie aged 13, just before she was diagnosed with narcolepsy

Around the same time as these symptoms, I also started to experience excessive daytime sleepiness, disturbed nocturnal sleep, sleep paralysis (where you wake up and can’t move) and hallucinations on waking or falling asleep. A helpful friend suggested that I might be haunted by a poltergeist, and I truly did start to think I was going mad.

But I was lucky in a way, because I had developed such textbook symptoms of narcolepsy and cataplexy that I was diagnosed really quickly. Many people spend years being misdiagnosed with iron deficiencies or ME, or are assumed to be plain lazy. 

The narcolepsy was difficult to manage, but the cataplexy, the loss of muscle control when I felt strong emotions like laughter, was probably the hardest to deal with. I almost had to change character, to stop myself from experiencing extreme emotions. For me, humour was my worst trigger, while a new film called Ode to Joy stars Martin Freeman as a man with cataplexy who can’t allow himself to feel joy as it brings on an attack. Everyone I’ve spoken to who was diagnosed in their teens went through the same personality shift in order to deal with the onset of the condition. You have to change so much about your lifestyle and reassess everything, from being able to take part in PE at school, to adjusting your hopes and dreams for the future. I had wanted to be an actress but soon realised that was no longer a possibility.

I was put on medication when I was 14, which did at least immediately stop the hallucinations. I started to feel sane again, if still unbearably sleepy. I would fall asleep in any moving vehicle, while watching TV, sitting at dinner and of course, in the classroom. It severely affected my grades, my friendships and my fitness, as I started what became a lifelong battle to avoid obesity, a common side effect for people who are too tired to exercise. 

narcolepsy bedroom
Narcolepsy is rare – only one in 2,000 people have it.

The medication didn’t help a lot with the daytime sleepiness, or the fact that I had become unable to sleep more than a few hours at a time during the night. If you have narcolepsy you want to take short naps 24/7, as your body doesn’t want to do ‘day’ and ‘night’. My cataplexy didn’t respond to treatment very well either, and it wasn’t until I was in my late teens and went on a different medication that I started to feel a bit like myself again. The unfortunate truth is that because narcolepsy is rare – only one in 2,000 people have it – pharmaceutical companies aren’t exactly falling over themselves to develop better drugs. That, combined with the fact that the jury’s still out on what exactly causes it.

My new prescription coincided with me leaving school and starting university at the age of 18. For the first time I was in an environment that I had control over: I could make sure I napped right before I had a class, meaning that I usually managed to stay awake throughout my lectures. If I did drift off, I was hardly ever the only one.

I guess it was socially acceptable to be tired as a student, because everyone just assumed you had been out partying the night before. In comparison, sleepy schoolchildren are scolded for having gone to bed too late the night before, while tiredness in the workplace is seen as a sign of weakness, laziness and lack of productivity. 

Finding my feet at university was great for my confidence, but when it came to applying for competitive internships, I tried to hide my condition. I remember grabbing naps during my lunchbreak on the floor of the toilet cubicles at the magazine offices I interned at. I wanted people to be able to see the work I could do, before they saw the illness. 

graduation
Narcolepsy: Katie at her graduation

And that’s the constant battle you have, being someone with an unseen disability. Do you try and hide it, because you’re high functioning enough to pull that off while secretly killing yourself trying to keep up with everyone else? Or do you admit that you have a disability and hope that people will take a chance on you and trust you to get the work done? It didn’t take long for me to realise that working in an office environment just wasn’t sustainable for me. In meetings I would always fall asleep, which is seen as completely unprofessional, even if people know about your condition.

narcolepsy freelance
Narcolepsy: "This is the sad truth for so many people who live with disabilities like narcolepsy: there IS a way we can work productively outside of the 9-5 office-bound schedule"

The sudden need to sleep is hard to describe, so I’m going to quote from the book Why We Sleep by Dr Matthew Walker PHD: “Just to give you a sense of what that feeling is… it would be the sleepiness equivalent of staying awake for three to four days straight.” In other words, it hits you like a truck and there’s no fighting it.

At this point in my career I decided to go freelance. And this is the sad truth for so many people who live with disabilities like narcolepsy: there IS a way we can work productively outside of the 9-5 office-bound schedule. But to establish yourself in an industry and be able to make a living doing that, you need a massive amount of privilege to get you started. I was only able to make it as a freelancer because of the support and safety nets I had for those first few years of carving out my career. In fact, almost everything that has made my life with narcolepsy better can be put down to the benefits of education, money and supportive family and friends. 

I remember going to see a specialist when I was in my 20s, who told me I was the first person with narcolepsy he’d met that wasn’t living on benefits. It didn’t surprise me. From not being able to drive, to having to explain your situation to people, and motivating yourself to push through the hard days, there are so many challenges to face when living with the condition.

One challenge that has recently begun to be researched is the link between poor mental health and conditions like narcolepsy, cataplexy and other unseen disabilities. Those with the conditions run an increased risk of anxiety, depression, social phobias and agoraphobia. 

baby sleep
Narcolepsy: "I personally developed anxiety after I had a baby, when I could no longer control when I napped"

I personally developed anxiety after I had a baby, when I could no longer control when I napped. Having not slept for more than four hours straight since I was 14, I was, in a way, uniquely suited to motherhood, but I was stressed by not knowing when I would get my next nap. Again, I was privileged enough to be able to educate myself about my symptoms and get the help I needed. I could afford to eat well, go to therapy and exercise.

As with some people, my symptoms have improved with time and now, at the age of 35, I experience fewer symptoms than ever. Both my narcolepsy and cataplexy have improved as I’ve gotten older, with the cataplexy almost disappearing after I got pregnant. There’s even a chance that they may go away completely after the menopause, according to a doctor I saw, so that’s something to look forward to! 

But for now, I still have to nap every day, and I can’t go for a day out without planning somewhere to nap at some point: from public transport to benches and bathrooms, I’ve napped anywhere and everywhere. These days I am entirely open about my condition. People are usually fascinated, often misinformed. Everyone is obsessed with sleep because no-one is getting enough of it. Finally people are starting to acknowledge that this is a really dangerous thing and that running on empty will literally kill you. Sleeping for four hours a night isn’t something to be proud of (sorry, Margaret Thatcher).

I’ve stopped reading articles about how if you don’t sleep a certain number of hours at a certain time of night then your hair will fall out and you’ll die young. I know. I have rubbish hair and nails. I sleep mostly REM sleep, meaning I never feel fully rested. 

But it’s not all doom and gloom. The Oxford Academic Journal of Neurology, called Brain, recently published a piece about how people with narcolepsy have increased creativity. We dream almost constantly, often lucidly and have very high dream recall because we’re constantly waking up. Although the last moment of inspiration I wrote down on waking reads ‘Phoebe Waller-Bridge seafood hat?’ 

So I guess I’m still waiting on that million-dollar dream idea.

The NHS defines the symptoms of narcolepsy as:

  • excessive daytime sleepiness – feeling very drowsy throughout the day and finding it difficult to concentrate and stay awake
  • sleep attacks – falling asleep suddenly and without warning
  • cataplexy – temporary loss of muscle control resulting in weakness and possible collapse, often in response to emotions such as laughter and anger
  • sleep paralysis – a temporary inability to move or speak when waking up or falling asleep
  • excessive dreaming and waking in the night – dreams often come as you fall asleep (hypnogogic hallucinations) or just before or during waking (hypnopompic hallucinations)

You can find out more information about the condition on the NHS website here and visit Narcolepsy UK for more information and support here. You can also call the Narcolepsy UK support helpline on 0345 450 0394.

You can sign up for Katie Antoniou’s newsletter, Grey Matter, about living with unseen disabilities and all the other grey areas of life by clicking here.

Images: Gemma Hall, courtesy of author, Unsplash

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