Not sleeping is awful beyond belief, but I can't imagine life without my insomnia

Sleeplessness is difficult to cope with, and can result in dizziness, paranoia and hallucinations. But chronic insomnia sufferer Nicky Woolf reckons he'll see the sunrise more times than you will.

I am writing this at half past four in the morning.

I usually work at night. I'm not asleep. Not because I am panicked about the deadline; no extraneous worries or gnawing doubts trouble the calm waters of my mind tonight. But I'm still not asleep. “I never sleep”, I joke to friends. It's not true – I do sleep, sometimes – but it's never easy. It's always a fight to push my brain under, as if I am drowning it. Sometimes, much more often than I would like, I simply lose; lie there listening to the white noise in my mind, snatches of songs playing over and over, meaningless words and phrases and images for hours on end until it's time to get up again un-rested; or, like tonight, give up entirely and get on with some work.

Sometimes, if I have something I really need to be well-rested for, like an exam or an interview, I will keep myself awake the couple of nights before, just to slightly increase my chances of sleeping the night directly before. Even this doesn't always work. My brain has an uncanny ability, no matter how tired I may be physically, simply to refuse to go to sleep. Sometimes I can trick it into relaxing. Rarely, but triggered seemingly by nothing, I have a particularly bad insomnia attack. During these, I can go days – very occasionally even weeks – without any satisfying sleep at all, leading to dizziness, paranoia and hallucinations; crackling or popping noises at the edge of hearing, and smoke or flashes in my peripheral vision. It is practically impossible to for anyone who hasn't experienced it to understand quite how awful it feels to operate on that little sleep.

Insomnia is not, in fact, an illness. It is a symptom – sleeplessness – with a wide variety of potential causes both physiological and psychological. General stress or worry, lifestyle changes, new work hours and so on can cause acute (in the medical sense, meaning short-term or temporary) insomnia, which can often also be a side-effect of other illnesses like those that affect the respiratory tract. About the causes of chronic, psycho-physiological or “primary” insomnia like mine, less is known. In about fifty per cent of cases it can often be linked to deeper-rooted psychological issues including depression. There is also a condition called somniphobia or hypnophobia, which is a chronic insomnia caused by an irrational fear of sleep after nightmares or trauma early in life.

But some people just don't sleep sometimes, with no visible links to previous trauma or current depression – and while there are behavioural changes and medication that can be used to ameliorate the problem, there isn't really a cure.

“People say things like, 'have a bath', or they ask 'have you tried having camomile tea before bed', says Clare*, who has suffered from insomnia since her early teens. “All obvious questions to which you obviously know the answer. They're well-meaning and sympathetic, but it kind of illustrates how very little they know about it. Because... there's an insanity that comes to you after a long time [without sleep] where your mind is stretched very nearly to breaking point, and no-one is going to assume when you're ratty, or crying, or having a weird reaction to anything it's because of insomnia. But it is. Because not sleeping makes you mad. It casts a shadow over the whole day. And because sleep is something everyone has and doesn't have a lot, it's something everyone thinks they can relate to. Everyone thinks they get it. But they don't.”

“About a third of the population has a tendency towards insomnia,” says Professor Adrian Williams, of the London Sleep Centre. “There are many potential causes – perhaps body clock problems, psychiatric issues around depression: probably 50 per cent of insomnia is linked overtly or subtly to depression. Then physical disturbances which cause patients to wake; most commonly, sleep apnea – snoring-related problems – restless legs. These are symptoms that the patient may not be aware of; they say 'I wake up and can't go back to sleep'. Then there's psycho-physiological insomnia, which used to be called Primary Insomnia, and the current thinking is that this occurs in a physiology which allows poor sleep.”

The human brain is a terrifically complex machine, and the subtlest changes in brain chemistry can have far-reaching effects on our lives. Sleep is regulated by a family of neurotransmitters produced in the hypothalamus; the most prominent one is gaba, (which stands for gamma-aminobutyric acid and interacts with the pontine tegmentum to initiate REM, or deep sleep), and in 1999 a neurotransmitter called “hypocretin” was discovered to act as a switch to regulate wakefulness, and is notably absent in narcoleptics.

About the physiological causes of insomnia in the brain, Professor Williams tells me, not much is known. Considering how common the problem is, and how numerous its variations, there have been very few studies ever done on human subjects. One, Webb and Bonnet, 1979, concluded that sleep deprivation carries “no ill effects” - but in that study participants had their sleep reduced no further than to four hours in every 24; the same amount, in fact, that Margaret Thatcher recommended for a productive life. The record for monitored sleep-deprivation is held by 17-year-old Californian high school student Randy Gardner, who stayed awake for 11 days in 1964, reporting hallucinations, problems with short-term memory and paranoia, and no long-term ill-effects were noted, though the experiment was conducted with the little scientific rigour. Harder-pushing sleep denial studies with animals – rats and dogs – do lead eventually to death.

“There are concerns about the physical consequences of poor sleep, and they're under investigation now,” says Professor Williams. “The textbooks would not talk about this stuff at the moment – textbooks being ten years out of date – but we in the field feel that insomnia is not as benign as it might seem. It's more than just an irritation, and should be taken seriously.”

For myself, I have no idea who or what I would actually be if my insomnia was cured tomorrow. Sleeplessness has been such a constant in my life that I'm not sure I'd know what to do if I could just lay my head on the pillow and switch off the way others can. If I'm under pressure, I can easily work 48 hours or even more without sleeping if I really need to; I've had plenty of practice.

On top of that, there is a strange and strangely wonderful community of the sleepless with whom I often share the connection of being online, awake, sleepless, frustrated, at past five on any given weekday morning. Oh yes: and I'll bet my last valium that we've seen the sunrise more times than you ever will.

In fact, the sun is just rising now.

*Names have been changed to protect identity

Sunrise over London. Photograph: Getty Images

Nicky Woolf is a writer for the Guardian based in the US. He tweets @NickyWoolf.

John Moore
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The man who created the fake Tube sign explains why he did it

"We need to consider the fact that fake news isn't always fake news at the source," says John Moore.

"I wrote that at 8 o'clock on the evening and before midday the next day it had been read out in the Houses of Parliament."

John Moore, a 44-year-old doctor from Windsor, is describing the whirlwind process by which his social media response to Wednesday's Westminster attack became national news.

Moore used a Tube-sign generator on the evening after the attack to create a sign on a TfL Service Announcement board that read: "All terrorists are politely reminded that THIS IS LONDON and whatever you do to us we will drink tea and jolly well carry on thank you." Within three hours, it had just fifty shares. By the morning, it had accumulated 200. Yet by the afternoon, over 30,000 people had shared Moore's post, which was then read aloud on BBC Radio 4 and called a "wonderful tribute" by prime minister Theresa May, who at the time believed it was a genuine Underground sign. 

"I think you have to be very mindful of how powerful the internet is," says Moore, whose viral post was quickly debunked by social media users and then national newspapers such as the Guardian and the Sun. On Thursday, the online world split into two camps: those spreading the word that the sign was "fake news" and urging people not to share it, and those who said that it didn't matter that it was fake - the sentiment was what was important. 

Moore agrees with the latter camp. "I never claimed it was a real tube sign, I never claimed that at all," he says. "In my opinion the only fake news about that sign is that it has been reported as fake news. It was literally just how I was feeling at the time."

Moore was motivated to create and post the sign when he was struck by the "very British response" to the Westminster attack. "There was no sort of knee-jerk Islamaphobia, there was no dramatisation, it was all pretty much, I thought, very calm reporting," he says. "So my initial thought at the time was just a bit of pride in how London had reacted really." Though he saw other, real Tube signs online, he wanted to create his own in order to create a tribute that specifically epitomised the "very London" response. 

Yet though Moore insists he never claimed the sign was real, his caption on the image - which now has 100,800 shares - is arguably misleading. "Quintessentially British..." Moore wrote on his Facebook post, and agrees now that this was ambiguous. "It was meant to relate to the reaction that I saw in London in that day which I just thought was very calm and measured. What the sign was trying to do was capture the spirit I'd seen, so that's what I was actually talking about."

Not only did Moore not mean to mislead, he is actually shocked that anyone thought the sign was real. 

"I'm reasonably digitally savvy and I was extremely shocked that anyone thought it was real," he says, explaining that he thought everyone would be able to spot a fake after a "You ain't no muslim bruv" sign went viral after the Leytonstone Tube attack in 2015. "I thought this is an internet meme that people know isn't true and it's fine to do because this is a digital thing in a digital world."

Yet despite his intentions, Moore's sign has become the centre of debate about whether "nice" fake news is as problematic as that which was notoriously spread during the 2016 United States Presidential elections. Though Moore can understand this perspective, he ultimately feels as though the sentiment behind the sign makes it acceptable. 

"I use the word fake in inverted commas because I think fake implies the intention to deceive and there wasn't [any]... I think if the sentiment is ok then I think it is ok. I think if you were trying to be divisive and you were trying to stir up controversy or influence people's behaviour then perhaps I wouldn't have chosen that forum but I think when you're only expressing your own emotion, I think it's ok.

"The fact that it became so-called fake news was down to other people's interpretation and not down to the actual intention... So in many interesting ways you can see that fake news doesn't even have to originate from the source of the news."

Though Moore was initially "extremely shocked" at the reponse to his post, he says that on reflection he is "pretty proud". 

"I'm glad that other people, even the powers that be, found it an appropriate phrase to use," he says. "I also think social media is often denigrated as a source of evil and bad things in the world, but on occasion I think it can be used for very positive things. I think the vast majority of people who shared my post and liked my post have actually found the phrase and the sentiment useful to them, so I think we have to give social media a fair judgement at times and respect the fact it can be a source for good."

Amelia Tait is a technology and digital culture writer at the New Statesman.