A new study has lifted the lid on what it feels like to live with chronic tiredness which no amount of sleep can shift.

The condition, known as idiopathic hypersomnia (IH), is described by the NHS as 'when someone sleeps for long periods and wakes up feeling confused or irritable and not refreshed'.

Hypersomnolence UK estimates there are 2,500 confirmed cases of IH in the UK, with thousands more currently unaware they are undiagnosed—or that their insatiable craving for sleep is abnormal. 

The underlying cause of IH has never been formally identified, and it is believed to be neurological in origin. 

People with the condition experience excessive daytime sleepiness, often sleep for extended periods overnight, suffer from fatigue, are extremely groggy upon waking (sleep inertia), and can nap for long periods of time but wake up just as tired.

This is where the condition differs from narcolepsy—where people need to sleep throughout the day but wake up feeling refreshed—for those with IH, no amount of sleep is enough. 

Previous studies have focused on what doctors and researchers know about IH, but a team led by Sarah Bermingham from Takeda Pharmaceuticals has now done a deep dive into sufferers' lived experiences. 

Their aim was to improve the level of care offered by medics, inspire new treatment pathways, and raise general awareness of the disorder.

Published in medical journal PLoS, the researchers looked at the contents of 346 social media posts, community forums, blogs, videos, and podcasts created by 123 people with self-identified IH between 2012 and 2022. 

The authors and creators looked at by Ms Bermingham and her team were mostly female (87 per cent), aged between 16 and 60,  lived in the US, Australia, Europe and Canada. 

The majority claimed that they needed at least 10 hours of sleep a night to function—but some said they needed at least 15. 

The NHS advises that adults get between seven and nine hours sleep per night for optimal health.

Healthy levels of good-quality sleep protect against multiple illnesses and life-limiting conditions, including obesity, diabetes, heart disease and even some cancers.

The team evaluated the creators' shared experiences and grouped them under 10 different themes. 

These were: prolonged sleep, never feeling fully awake, relentless sleepiness, non-restorative sleep, difficulty in waking, automatic behaviour, microsleeps and prolonged naps, cognitive difficulties, limited physical energy, and vivid dreams and hypnogogic hallucinations. 

As part of their findings, the team shared some of the typical statements people make about living with IH—and they might resonate with other people who are currently undiagnosed. 

One said: 'Another way to describe it is if you’re given anesthesia, but then you’re told you must stay awake. That’s how we feel all day.'

Another said: 'The feeling of sleepiness becomes so strong that I literally feel like I can’t go on living, so my entire world revolves around this sleep need.'

'No matter how much sleep I get, I never feel rested...I am constantly in a state of sleepiness. I never feel fully awake,' wrote another. 'I am fatigued and have a foggy brain, I can’t think straight, and I become confused quite easily as I feel so sleep deprived. 

'Although technically I’m not sleep deprived because I get more than enough good quality sleep. Sleep just never, ever, leaves me feeling refreshed, no matter how much I have.' 

The researchers took a similar approach to identify the 'life impacts' caused by IH, identifying seven distinct domains: Psychological and emotional well-being, activities of daily living, injuries, relationships, work and school, physical health, and healthcare and treatment burden.

Some of the shared experiences included: 'I cannot exercise – I simply do not have the time or the energy'; and 'I even had to make the heartbreaking decision not to have children because I’m too sick to care for them'. 

Another person said that IH stopped them from being a good friend.  

They wrote: 'We get called flaky for not showing up...but what they don’t see is that we wanted it so much...but as we were getting ready, our bodies gave up on us like cars that leave you on the side of the road.'

The study authors noted that 'IH has a profound impact on quality of life, significantly impairing emotional wellbeing, daily functioning, work productivity, career choices, social participation, and personal relationships'.

Furthermore, the condition has a knock-on effect on their loved ones and colleagues who have to deal with their exhaustion, often poor mental health, and time constraints due to the amount of sleep needed. 

While there were a multitude of shared experiences for the research team to sift through, they noted a common theme was not being taken seriously—and when it was, the answer was usually some form of stimulant medication.

It's important to note the authors noted some limitations in this study. Firstly that the data was SGOPE (spontaneously generated patient experience) which means that the diagnoses have to be taken as self-reported. 

The researchers had no way to verify the study subjects' demographic characteristics or clinical history, but noted that they were the type of people who would feel comfortable sharing their experiences online.