My days are 26 hours long due to a neurological condition (Non-24-Hour Sleep-Wake Disorder). Ask Me Anything!

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I have an illness called Non-24-Hour Sleep-Wake Disorder. It’s a type of Circadian Rhythm Disorder, and it means that my days are abnormally long. Since 1992, my sleep-wake cycle has shifted later and later every night. For example, if I fall asleep at midnight, on subsequent nights, the sleep time is 2AM, 4AM, 6AM and so on, putting me out of sync with the outside world.

Until I figured out what was going on, I spent more than 10 years housebound with severe fatigue and without any income or benefits. I got into quite a few battles with doctors, and I didn’t get my official diagnosis until 2019.

Work-wise, I work as a freelance writer so I can work when I want to. It’s an isolating disorder, and it affects my social life quite a bit. Being rare and invisible, it’s an illness that people find difficult to believe exists (look it up, it does!). Since my diagnosis, I’ve been in touch with an online community of sufferers.

Here’s an article I wrote (2019) about my long journey to getting a diagnosis: https://metro.co.uk/2020/11/15/what-it-feels-like-to-always-be-tired-13582632/

Here’s the Wikipedia page about my specific disorder: https://en.wikipedia.org/wiki/Non-24-hour_sleep%E2%80%93wake_disorder