Jennifer Low

Lived Experience member

Jen lives in Western Australia and has Narcolepsy without cataplexy. She is also a member of the Sleep Health Foundation Board.

I first started experiencing excessive fatigue and other symptoms in 2012 when I was working as a researcher just out of university. It was around 2 years later in 2014 that I was officially diagnosed with narcolepsy after an initial diagnosis of anxiety. My narcolepsy developed after a series of medical events with overlapping symptoms which I believe made the path to diagnosis more complicated.

Initially I experienced overwhelming day-time fatigue. I was later diagnosed with glandular fever and so my day-time sleepiness was attributed to this. The symptom that led me down the sleep disorder path was the hypnagogic hallucinations (hallucinations as I fell asleep) combined with the vivid nightmares 2 or 3 times a week. Even then however the first assumption was anxiety. I had to continue expressing that I thought it was a sleep disorder and wanted testing for such before I got onto the right path.

The biggest impact on my day-to-day activities is being tired from mid-afternoon onwards (on a good day) and having to explain why I don’t typically want to go out to dinner or an event if it’s late (7.30pm onwards). When I try to explain to others the typical response I get is “you can’t be that tired” or “have a coffee to perk you up”.

I joined the Consumer Reference Council for the opportunity to work with others with various sleep disorders to raise community awareness. If you have that gut feeling that something is not quite right and any medical assistance you have sought doesn’t seem to be hitting the mark – don’t give up. Take the time to research various sleep disorders and go to your next medical appointment prepared. Ask if your symptoms could be a sleep condition and what tests might be available to confirm or rule it out as sleep disorders are commonly misdiagnosed as mental health conditions.