Lorna O’Connor was nine when her father died from a sudden heart attack. Her life ever since has been ruled by sleep anxiety and, as a result, insomnia. She had never been a particularly good sleeper, but the night she awoke to the sound of her dad dying made things far, far worse. 

“Sleep became impossible,” the 25-year-old from Shropshire, who lives with borderline personality disorder, tells HuffPost UK. “I would stay up listening to my mum’s snoring just to make sure she was alive. I was petrified that if I slept, something bad might happen, and I wouldn’t be awake to help.”

An estimated 20% of the population struggles with insomnia in one form or another. Less clear are the numbers of people living with either sleep anxiety or even somniphobia – where a person has a very real fear of falling asleep.

Kathryn Pinkham, founder of The Insomnia Clinic, says a lot of insomniacs she sees have anxiety about going to bed, but that genuine phobia of sleep, where people like O’Connor are more likely to avoid bedtime altogether, is rarer.

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When you take to the internet, where many go to find answers in the dead of night, mental health forums reveal insights into the experience of somniphobia.

“I used to go through stages of being very scared of going to sleep,” one person writes. “Sometimes when I couldn’t sleep it was because of a fear of the experience of the sleep state itself – an anxiety, perhaps, about me not being in control? I don’t know, just the idea of being asleep was frightening.”

Another said they had that same fear of being unconscious, of falling asleep, of knowing that they couldn’t do anything about it.

O’Connor’s childhood was traumatic – and she acknowledges this is another reason why she is fearful of bedtime. She grew up in a home with frequent incidents of domestic violence and would often be sent to bed when this was happening. As a result, she says, her bed became a place associated with high anxiety. “I would lie there listening to my parents argue and hear violence,” she recalls. “I always had to stay awake until these incidents ended, as I feared what might happen if I fell asleep. I felt I had to make sure everyone was safe.”

In this case, O’Connor’s fear of sleep is her body’s way of dealing with what happened in the past, suggests Pinkham. It’s a protective mechanism – the brain has linked bedtime with negative experiences and that signals a red flag.

“If you associate bedtime and bed with a terrible experience, your mind would connect the two together,” Pinkham explains, likening the response to post-traumatic stress disorder. “While your rational mind would say, ‘of course going to bed isn’t scary’, your mind has made that connection in order to try and protect you – [it’s saying] keep out of that place, don’t go back there.”

While O’Connor has a genuine fear of falling asleep because her mind believes something bad might happen if she does, there are people whose lives are ruled by a more generalised anxiety just before bedtime, which can also spiral into sleepless nights.

Michelle Bradley, 34, from Belfast, has struggled with anxiety before bed ever since childhood and remembers putting soap in her eyes when she was younger in a desperate bid to make them “feel sleepy” – she believed it would help her finally be able to drift off.

“I was an anxious child and hated going to bed because I would lie awake worrying about anything and everything,” the event manager explains. “I did everything I could to avoid bed and would get anxious as soon as bedtime came around.”

When her eldest daughter was born, Bradley struggled with postnatal anxiety and depression which ramped up her sleep issues. She would get into bed and feel panicked. “When I did finally drift off I would often be woken mid-panic attack and would spend the rest of the night trying to shake it off. I began staying up all night watching TV, hoping it would distract my brain enough from my thoughts to help me sleep but it rarely did. I just wouldn’t sleep.” 

Stress is a major trigger for Bradley – whether that’s work-related or illness-related. Sometimes, she admits, it seems to flare up for no reason at all. She has tried varying pills over the years after visiting doctors about her struggles, but says some made her insomnia worse and others just didn’t help.

Recalling the times in her life where she’s felt completely ruled by sleep anxiety, she says in school she would be so tired she couldn’t concentrate. “The second half of my days were consumed with anxiety about bedtime approaching,” she says. “I would do anything to avoid lying in bed, like escaping to the bathroom to read a book or reciting passages from books in my head.”

Strategies like this aren’t uncommon among sufferers. Pinkham says she’s worked with people who sleep on the sofa. In more extreme cases, some use alcohol or drugs so they aren’t properly aware of going to bed, she adds. As a teen, O’Connor moved her bedroom to the ground floor of her family home so she wouldn’t stay awake all night listening out for noises and movement.

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It was when O’Connor moved into a flat share for university that her fear of sleep spiralled completely out of control. “I would just be falling asleep then hear my housemate step on a floorboard going to the toilet and I’d suddenly be sat bolt upright in bed having a full-blown panic attack,” she says. At this point she was getting about two hours sleep a night, and – like Bradley – would spend much of the day anticipating the anxiety she got when she went to bed.

Things escalated to the point where staying up all night studying became more desirable than trying to sleep. O’Connor would squeeze in naps where she could to get by. At this stage, she acknowledges, it had taken over her life: “I remember sitting in bed one night at 3am, having had repeated panic attacks because my housemate was ill and kept coughing, and just thinking: ‘If this carries on I can’t live like this.’

“I struggled with my studies, I was snapping at all my friends, I never wanted to do anything because I was so exhausted. I literally couldn’t think about anything but sleep and how tired I was.”

There are many reasons why people might get anxious about going to sleep and the experience can range in severity.

For Anna Walton, 43, from Shoreham by Sea, the anxiety stems from the fact that when she actually nods off, she suffers night terrors and other sleep disturbances such as sleep walking, which send her into a full-blown panic.

She’ll start to get fidgety around 8pm, when her children go to bed, as she knows what lies ahead. She doesn’t have a major problem with falling asleep, but it’s what happens once she does drift off that causes her issues. “My night terrors usually happen about 30 minutes after I go to sleep. These usually take the form of thinking I’ve lost something and I shout out ‘NO NO NO’. It’s a feeling of losing control,” says Walton, founder of Chalk & Moss homeware.

She is currently having cognitive behavioural therapy (CBT) to try and tackle the issues, which she says are tied to generalised anxiety. She also has workarounds such as not using devices or working before bed, steering clear of caffeine in the afternoons, and making her bedroom cosier with essential oil candles and plants to purify the air. “Calm evening activities definitely help, like reading or creative activities like crocheting and drawing,” she adds. “I also practise meditation in bed before I go to sleep.” 

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Sadly, not everyone has had such a positive experience of finding the support they need. O’Connor says some of the medical professionals she’s seen over the years haven’t taken her problem seriously and claims one GP even rolled their eyes at her and said: “You’re a student, you’re not supposed to sleep.”

“I was shocked,” she says. “I think people lump this more extreme sleep disorder in with the likes of very mild insomnia, and it’s nothing like that. It eats into every single aspect of your life.”

She was prescribed sedatives but they didn’t work and left her feeling even more exhausted. She also paid £90 for a consultation with a sleep therapist, who, she says, gave her standard sleep hygiene advice. “That didn’t work either as it was so much deeper than mechanical problems with sleep and had such complex routes,” she says, acknowledging her health and family history.

Pinkham urges people with a sleep phobia or anxiety to seek help, especially if their life is being ruled by it. She says she would advise CBT to “unclip” any negative connections between a person’s bed and their life. Some people might also need anti-anxiety medication or antidepressants to help with low mood, she adds – although she wouldn’t recommend this as a single solution.

As for O’Connor, four years ago, she had something of a breakthrough: “A GP prescribed me with quetiapine [antipsychotic medication]. She noted I struggled to feel safe and calm my internal voice, which was constantly catastrophising, and also noted it would help with my borderline personality disorder. The dose has a sedative effect and has honestly changed my life. I’ve been on it for around four years and rarely struggle with sleep now.”

Useful websites and helplines:

• Mind, open Monday to Friday, 9am-6pm on 0300 123 3393
• The Mix is a free support service for people under 25. Call 0808 808 4994 or email: help@themix.org.uk
• Rethink Mental Illness offers practical help through its advice line which can be reached on 0300 5000 927 (open Monday to Friday 10am-4pm). More info can be found on www.rethink.org.