If you’re struggling with sleep, you’re not alone: about 70 million Americans have a sleep disorder. But what does a serious lack of sleep feel like – especially when you have a condition that isn’t very common, and other people may not understand? Women share their stories, plus how they cope with their condition.
What it feels like to have a sleep disorder
1st March, 2023 • 7 min readReviewed by
Most of us know how a bad night’s sleep can affect us the next day – we feel tired, irritable and lacking in motivation. But what happens when you’re not sleeping well, night after night?
“Poor sleep can have an impact on your judgment, relationships, waistline and immune system, and even your risk of getting some serious health conditions,” says Dr Ann Nainan, family doctor and Healthily expert. “Sleep is incredibly important to helping us live long and happy lives.”
But there’s a big difference between a few nights of bad sleep and having a chronic sleep disorder, such as insomnia, narcolepsy or sleep apnea.
Here, women share how their sleep disorder impacts their life, and the solutions they found for better sleep.
You can also read about how women cope with more common sleep problems.
Narcolepsy
“I couldn’t drive without falling asleep – but the right medicine helps”
Alyssa, 28, was diagnosed with narcolepsy after years of sleep problems.
“As a freshman in college, I started having trouble making it to my classes. I would wake up, only to fall back asleep and dream that I was getting ready.”
“I stopped going to see my parents as frequently because I couldn’t make the hour-and-15-minute drive home without falling asleep. I was extremely irritable all the time. I would cry over silly things, like it being too hot outside. The more I stressed, the sleepier I would get.”
Alyssa now takes medication to help her stay awake during the day, and another medicine to help her sleep at night. “They don’t solve everything but, along with certain lifestyle habits, they help me live a normal life.”
“I had night terrors and sleep paralysis, but I have my condition under control”
“By the time I turned 35, I was more than just sleepy. I had terrible brain fog and memory issues, and I lost chunks of time when driving, washing dishes or typing emails,” says Lindsay.
“I had night terrors and sleep paralysis. Night after night, I was woken up by a child's voice asking to hold my hand. How did I know it was actually a hypnagogic hallucination [waking dream] that needed medical attention?”
Lindsay’s doctor referred her to a sleep specialist, and she was diagnosed with narcolepsy. A combination of medication, meditation and lifestyle changes means she now has her condition under control.
Read more about narcolepsy and how to cope with it.
Insomnia
“Insomnia felt like a gorilla on my chest – overcoming insomnia is still a work in progress”
Kim Cattrall – yes, Samantha from Sex and the City – describes insomnia as “a gorilla sitting on my chest.”
“I didn’t understand the debilitating consequences of having no sleep. It becomes a tsunami. I was in a void.”
The actress had to pull out of a play she was performing in London due to exhaustion caused by insomnia, but says she realized “the work I needed to do was more important than the play – I had to work on my sanity.”
Kim turned to cognitive behavioral therapy (CBT) which included relaxation exercises and new ‘sleep rules’ from her doctor, such as no daytime naps and getting out of bed if she didn’t feel sleepy.
The actress is now sleeping much better, but admits “I’m still calibrating my sleep. Overcoming insomnia is still a work in progress.”
“Multiple interventions helped me tackle insomnia”
Yvette goes through periods of insomnia that can last for months.
“At 5.30 in the morning, I should be either still sleeping or waking up to work. But instead I’m studying the swirling patterns inside my eyelids,” she says.
Sleeping tablets didn’t work long-term, so Yvette started trying lifestyle changes. These included keeping a sleep journal – which helped her work out some triggers – and sticking to a set sleep schedule: going to sleep and waking up at the same time every day.
“I also put my devices down a few hours before bed, switch over to a good paperback, and stop the caffeine intake by 2pm. I’ve found multiple interventions can make a dent in even the most stubborn insomnia. I’m not entirely back on schedule but I feel a lot better.”
Read more about insomnia and how to improve it.
REM sleep behavior disorder
“Sleepwalking meant I wasn’t safe – but medication helps my symptoms”
“Growing up, I acted out my dreams all the time,” Camille says. “In my teenage years, I had a job at Walmart, and often sat up in bed, talking to customers and scanning imaginary items.”
Camille’s sleep-acting often involved sleepwalking which put her in danger. Once she woke up holding her front door wide open, and another time she found herself leaning out a window in the pouring rain. “When I was alone, I wasn’t safe.”
Following a sleep study, Camille was diagnosed with REM sleep behavior disorder – a rare condition – and now takes medication to help her symptoms.
Read more about REM sleep, including REM sleep behavior disorder.
Sleep apnea
“I felt as if I was dying – I’m overjoyed to finally have an answer”
Sleep apnea is more common in men, but Ruth lived with the condition for years before finding a solution.
“I’ve been dog-tired since my teens. Not just a bit worn out, but so drunk with fatigue that my brain itches, and I’m clumsy and forgetful.”
Her daily routine involved getting up (tired), taking the kids to school, going back to bed for a few hours before doing some work, then collapsing on the sofa. “I was utterly despondent and felt as if I was dying.”
After hearing about sleep apnea on the radio, Ruth realized her symptoms were exactly the same. She now uses a continuous positive airway pressure (CPAP) machine to help keep her airways open at night.
“It will be a while before I feel like I’ve caught up on all the sleep I’ve missed, but I’m noticeably sharper, and very optimistic about further improvement. I’m overjoyed to finally have an answer and a treatment.”
Read more about sleep apnea and how it can be managed and treated.
Restless legs syndrome (RLS)
“It feels like a toothache in your leg – I’m controlling symptoms with exercise”
“I once heard someone describe restless legs syndrome (RLS) as a toothache in your leg, and that’s what it feels like for me,” says Kathryn, 31.
“Most of the time I feel it when I’m trying to go to sleep. So, I get up and walk around. But that wakes me up even more. Then I start thinking about it, and thinking about it just seems to make it worse.”
Kathryn is currently controlling her symptoms with exercise. “I’m training for a marathon, so the RLS is fine as long as I’m training. But if I don’t do much running the week after, the pain in my legs feels worse.”
Read more about RLS and how you can manage and treat it.
Get your sleep disorder sorted
If you’re struggling to get a good night’s sleep, talk to your doctor. “They can help you work out the best plan of action,” says Dr Ann. “That could be further tests, lifestyle changes, or simply help to stop you worrying about getting enough sleep.”
Remember that some sleep disorders can be triggered by stress, anxiety bereavement or medication you’re taking. Tell your doctor if you’re going through any of these issues, to help find the best sleep solution for you.
Find out more about sleep disorders in our guide to better sleep.
Quotes are the views of the authors of these statements and are not necessarily the views of Healthily, its medical team or writers.
Important: Our website provides useful information but is not a substitute for medical advice. You should always seek the advice of your doctor when making decisions about your health.