10 Questions You Always Wanted to Ask Someone With Narcolepsy

This article originally appeared on VICE Serbia

Around 3 million people worldwide suffer from narcolepsy – a brain condition that causes you to suddenly fall asleep without warning. Its main symptoms are excessive daytime drowsiness, sudden loss of muscle control and sleep paralysis.

To the eternal frustration of narcoleptics like Ana Jovanović, nobody knows what causes narcolepsy – though the 21-year-old says her episodes are often triggered by extremely stressful and emotional situations.

I spoke to Ana to find out more about what it's like to live your life knowing you could fall asleep at any moment, and what you should never say to a narcoleptic.

VICE: Hey, Ana – when did you realise that you suffered from narcolepsy?
Anu Jovanović: I'd never even heard of the condition until I was diagnosed last year. Before then, I would just lie in bed for the entire day, unable to get up. My psychiatrist referred me to the only doctor in Serbia who specialises in sleeping disorders. What does an episode look and feel like?
Well, thanks to my medication, I don't experience the more extreme symptoms as often and as acutely as I used to. Previously, I'd almost be completely unable to move for around half an hour. People would think I was asleep, but I wasn't – I was aware of everything that was happening around me, I just couldn't move or speak.

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Do you dream?
Yes – and very vividly, too. Most people struggle to dream during a short nap, but with narcolepsy it's a lot easier. What was it like to have it as a child?
All through high school I would need to take a nap for half an hour every day, which always involved really vivid dreams. I was told that it was down to low blood pressure, but now I know it was actually narcolepsy.

What was the most frustrating thing about having narcolepsy before you got treatment?
Before I started on my medication, it made me so angry that I couldn't stay awake in lectures and that it could suddenly happen to me at any time. Thankfully, it's much milder now – instead of half an hour of being completely motionless, I just feel super tired instead. Also, when I go out, I have to watch how much I drink – mixing alcohol and my medication can cause insomnia.

When does it hit you the hardest?

Normally when I'm at any kind of public event. It just creeps up on me and, before I know it, I’ve missed a bit of the concert, film, whatever. It always leaves me feeling extremely awkward when it happens and I'm surrounded by my friends. Of course, they know exactly what's going on, but I still can't shake the sense that I'm somehow being rude.

Are you allowed to drive?

I'm not actually sure, but either way I don't. I know some countries allow narcoleptics to drive, as long as you can prove that you have your condition in check.

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What type of medication are you on?
Modafinil, the most effective medication for my condition, isn't actually available in Serbia. Six months ago I applied for permission to import it, but my application is still under review. I could just buy it off the internet, but I really don't trust anyone selling it for €30 (£26.80) when the legal price is around €400 (£357). In the meantime, I'm prescribed pills that are really meant to treat ADHD.

What's the worst side effect of your condition?

Narcolepsy can be set off by being in an extreme emotional state, so it always seems to hit me after a big argument or when I'm extremely happy. It often feels like I'm forced to stop myself from being extremely happy just to manage my narcolepsy.

How do people respond when you tell them about your condition?
When I explain what it is, people suddenly say they have it too, or they tell me that it must be lovely to be able to sleep wherever and whenever I want. It's really annoying.