A mother of two described a terrifying condition that sees her jolted from sleep, only to be tormented by disturbing hallucinations and visions of “an evil presence” which she cannot escape, as her body remains completely paralyzed.
Plagued by the extreme night terrors—known as sleep paralysis—for 17 years of her life, Sarah Spence, 36, slept for a maximum of three hours-a-night for the last decade. She often retired to the sofa, where she nods off sitting upright, as it eases her symptoms.
Unable to move or speak for up to three hours, Sarah, of Hull, East Yorkshire, England, who experiences these monstrous waking nightmares nearly every night, said:
“It’s far worse than having a bad dream.”
Sarah at home in Hull (Collect/PA Real Life)
“I’m totally conscious and aware of being trapped in a body that won’t let me wake up properly and get up.”
“It’s absolutely terrifying and often the feeling of being frozen is accompanied by horrible hallucinations and visions of an evil presence.”
“Now I just won’t go to sleep until I really can’t keep my eyes open any longer, because the fear is that one day I won’t be able to wake myself up and I’ll be trapped inside the nightmare forever.”
Sarah and her two boys, Kieran and Liam (Collect/PA Real Life)
Only able to work night shifts because the pattern of her episodes makes getting up in the morning very difficult, Sarah claims it has become progressively worse since splitting up with the father of her two sons, Kieran, 14, and Liam, eight, in 2016, after their relationship ran its course.
Too embarrassed to tell her GP the whole truth, she has only sought help with insomnia and anxiety—self diagnosing sleep paralysis after reading about it on the internet.
The mysterious affliction, with no treatment—the cause of which is also unknown—is defined as a temporary inability to move or speak, which happens when waking up or falling asleep.
Sarah’s bed where she experiences sleep paralysis nearly every single night (Collect/PA Real Life)
Frequently forced to rely on her boys to come and rouse her from her frozen state, she said:
“I am so deep in the paralysis that sometimes it’s only when Kieran and Liam come in and jump on my bed that I’m able to finally get up.”
“My sister Michelle has to ring me every morning, because I’ll usually be in this state through all of my alarms.”
“Sometimes, because of the paralysis, I just can’t move to answer the phone either, though, and get up to find that I’ve had 40 missed calls from her.”
Sarah’s problem can also affect her family—often making her late taking her sons to school for morning registration.
“I’ve been called in a couple of times by the school to explain why the boys are so often late in.”
“When I’m asked what the matter is, though, and why it happens, I usually say that it’s to do with anxiety and stress. I just can’t bring myself to explain what’s really wrong with me.”
Sarah sleeps only three hours a night (Collect/PA Real Life)
Sarah’s first experience with sleep paralysis happened at just 13 years old, having never previously had any problems with sleeping.
“It was very scary the first time it happened because I had absolutely no idea what was going on.”
“I was lying on my stomach, feeling like I had woken up, but I just couldn’t move a muscle. I tried screaming, but I couldn’t make a sound and had a very realistic hallucination that I was falling and being bounced around my bedroom.”
Sarah, on her 18th birthday (Collect/PA Real Life)
While it lasted a matter of minutes, it felt like hours and, as the years passed, she began to experience the frightening episodes almost every night, lasting for longer and longer periods—making her scared to go to sleep.
But it was not until her late teens that she found the courage to tell anyone about what was happening.
“I told my brother one day and it made me feel a lot better about it all.”
Sarah and her two boys, Liam and Kieran, in Tamworth, 2018 (Collect/PA Real Life)
“It was nice to get it off my chest and hear someone be sympathetic and not make me feel like I was going mad.”
Sadly, other family members dismissed her sleep paralysis as “just bad dreams,” making her clam-up again.
“After that, I stopped telling people altogether and certainly wouldn’t go to the doctor about it, worrying that they’d just take one look at me and think I was a fool.”
Sarah and her best friend Sammie in Hull, 2017 (Collect/PA Real Life)
Amazingly, during her 20s she met her boys’ dad, and, no longer sleeping alone, the episodes stopped for six years.
“The reassurance of having another person there really helped to calm it down.”
But, turning 26, triggered possibly, she says, by the death of her mother, the tortuous episodes resumed.
“When they came back, I was quite wary about telling my then partner and when I finally did, he just passed it off as nothing.”
Often finding herself frozen, trying to shout out to her boyfriend, she would wake up flustered and sweating, only to find that she had not made a sound.
“Sometimes, when I was really, really distressed and trying to break out of the paralysis, he would notice it if he was awake and watching me.”
Sixteen-year-old Sarah (far left) with her mum, dad, aunt and little sister (Collect/PA Real Life)
“He’d comment that I’d be twitching a lot in the night, as though I was being shocked by something.”
When the couple split up, sleeping alone again, Sarah’s condition worsened.
“Without having the reassurance of another presence beside me I felt like I was less safe and the sleep paralysis began to hit me a lot harder than it had before.”
Sarah with her friends in Hull, 2017 (Collect/PA Real Life)
Returning with a vengeance, the episodes were now so bad that Sarah was forced to change her working hours as a caregiver.
She was no longer able to do morning shifts, because of her frequent inability to get up on time, as the paralysis trapped her in bed.
Now, starting work at 5pm, she is home before midnight and her sister looks after the boys while she is out.
Sarah and her two boys,Liam and Kieran, in Majorca 2017 (Collect/PA Real Life)
But, instead of heading straight to bed after her late-night shift, Sarah will stay up as late as she can—too scared to sleep, knowing that the paralysis will strike.
“I usually won’t go upstairs to bed, I’ll just fall asleep on the sofa, because the symptoms aren’t as bad when I’m sitting upright.”
Feeling acutely isolated by her condition, Sarah is dismayed by the lack of information about it.
“Aside from a few social media groups, there’s so little out there about sleep paralysis and no one seems to know much about it.”
“I would love to be able to meet other people and talk to them about their experiences, but it is so uncommon I’ve never met anyone who’s like me.”
“I’d like to know that I’m not alone, because it’s something that’s had a profound effect on my life and I feel as though nobody understands.”
Sarah, aged 25, with her younger sister Theresa (Collect/PA Real Life)
“I wish there was a cure for it as I feel like, to some extent, it is really starting to take over my life, being afraid to do something every day which most people think is just the easiest thing in the world.”
“But apart from that, just for people to be aware that it exists would be a great first step and would help people like me feel that I’m not just slowly going mad.”
A version of this article originally appeared on Press Association.