Weekend Essay: What my narcolepsy diagnosis has taught me about vulnerability

For as long as I can remember, I’ve had issues with sleep. As a child, I suffered from insomnia. Often I wouldn’t fall asleep until 2am and would have to get up at 7am for school. It was a source of great anxiety and annoyance.

I had a sleepwalking and sleeptalking phase, which lasted a lot longer than it should have. My mum loves to tell the story of the time that, when I was about 10 years old, I terrified her by standing over her bed and telling her I “couldn’t get the sleeves off my chair”. I still have no idea what this means.

She also loves to tell me about the time she caught me trying to sneak six packets of Mini Cheddars up to my room post-midnight – an event of which I have absolutely no recollection.

I used to feel sleepy and fall asleep in class at school, and would often get told off for not paying attention. At university, I would continue making notes as I had a “microsleep” attack (falling asleep for a few seconds). Some of the notes I made while asleep were fascinating.

I often joke that I can fall asleep anywhere, except bed at bedtime. Only it’s not a joke. I’ve nodded off in an open-topped bus on the motorway, a speeding speedboat, standing up on the tube, in the pub. You name it, I’ve probably slept there. But 11pm at night, in my comfortable bed? No chance.

I never used to know what it was. I thought maybe I was just lazy. Or that I just had insomnia. I’d heard of narcolepsy, I just thought it was people dropping off to sleep mid-sentence while standing up. And I’ve never done that.

More recently, I was having a conversation with a friend and we somehow got onto sleep. She said she’d been reading about narcolepsy and described the exact symptoms I suffer from: excessive daytime sleepiness, suddenly going weak when something makes you laugh or makes you angry, and perhaps the most frightening – sleep paralysis, where you can’t move or speak but you are conscious. It’s often accompanied by vivid hallucinations.

Narcolepsy is a rare long-term brain condition where the brain is unable to regulate sleeping and waking patterns normally, resulting in some or all of these symptoms.

Well, I have every symptom. So I made an appointment with the doctor and, 18 months later, I have a formal diagnosis.

It’s nice to have the confirmation that I’m not just lazy. Knowing what you have is always better, because it gives you a better chance of controlling it.

Narcolepsy is not life-threatening, but it is chronic. There is no cure and I might have to take medication for the rest of my life, which I’m not thrilled about.

As well as taking medication, the advice is to try and establish a routine of regular going to bed and waking-up times. That will be an issue for me because I’ve never been one for routines, and it’s difficult to establish this with my job. The doctor has also suggested eating healthily (I already do this), not drinking alcohol (hard pass) and exercising regularly. I do remember five years ago when I was super fit, the symptoms did subside, so I will definitely be following that advice.

Given this diagnosis, I’m now going to have to pay for a prescription for Modafinil for the rest of my life. My car insurance will almost definitely go up as a result of telling my insurer.

I’ve managed not to let it affect my work too much by taking naps at lunchtime when working from home, and just drinking a lot of coffee in the office.

The thing it has really shown me is the plight of those with hidden disabilities. And also people’s ignorance about, or lack of willingness to accept, their own situation.

Narcolepsy is technically classed as a disability in the UK. But the severity of symptoms varies widely. I’m perfectly able to walk that bit further to the supermarket from the car park, so I would never even consider applying for a Blue Badge (and I wouldn’t get one even if I did).

Before getting my diagnosis and reading about narcolepsy, I would never even have considered myself to have a disability or vulnerability. Quite the opposite. In my head, I’m very robust.

But narcolepsy can have a massive impact on your life. People often think you’re just lazy or being rude (I’ve definitely experienced this) and it can make you feel isolated and depressed.

Studies have shown a high prevalence rate of depression among people with narcolepsy. In fact, a 2020 meta-analysis of 31 prior studies carried out in the US found that people with narcolepsy have depression or depression symptoms at a rate of 32%. This is almost four times the rate of depression that the CDC estimates in the general population.

The illness is often depicted as a joke in the media and entertainment, and there are misconceptions around it (like me thinking it was just people falling asleep while walking along), and this prevents people from getting diagnosed. But it’s estimated to affect about 30,000 people in the UK.

It is also physically exhausting, especially the hallucinations and waking nightmares.

Many of you will know I’m constantly going out and socialising at events. I’m often asked by colleagues and peers how I have so much energy. The answer is, and my close family and friends will attest to this, I’m dead on my feet the rest of the time.

Although most of the symptoms are unlikely to get worse with age, cataplexy (the going weak when I laugh thing) can get much worse and can result in severe disability if not controlled.

And I’ve read that the condition often leads in later life to an inability to work and therefore to early retirement – something which, based on my current trajectory, I cannot afford.

If there’s one lesson for financial advisers, it’s that you never know what conditions people have hiding under the surface. Anyone can have vulnerabilities. Even me.