I checked the date of my first blog post on here and it was March 2019, that is actually crazy. So why after all these years am I still harping on about Narcolepsy and raising awareness?
- People STILL don’t know what it is
I still get the same comments that I did when I was first diagnosed back in 2017. The ‘are you going to fall asleep now?’ or ‘i wish i could sleep on command’. The sole reason why i started my blog in the first place was to be able to educate and inform the public on our condition….it was also cheaper than anger management. So I decided to turn the frustration I would feel at ignorant comments into educating instead, in the hope that one day we wouldn’t get as many crazy comments. Sadly, our condition is still being misrepresented and even made fun of (I’m looking at you ‘The Boys’ on Prime) in the media and even though I get a bit of imposter syndrome at times, if i can be another voice to correct the narrative, even with a small following, I will do it. If you don’t have Narcolepsy and think that you don’t need to pay attention to advocacy or awareness pieces, please reconsider. Someone in your life could be suffering and need signposted and you could be that person.
- People are STILL not being diagnosed correctly, in a timely manner or not at all
Narcolepsy affects 1 in every 2500 people, in Northern Ireland we have about 100 people as officially diagnosed, those numbers don’t add up.
It’s not just the ordinary person that doesn’t know what Narcolepsy is, the medical profession doesn’t either. Our future doctors are still only spending as little as 1 lecture in a 7 year course to cover sleep conditions, which mostly focus on respiratory sleep disorders and effectively ignoring Narcolepsy, which is a neurological condition. I have actually offered to give a lecture on Narcolepsy but I got no response. If we don’t fix this at the source, how can we expect GPs to be able to pick up on signs that a patient is suffering from Narcolepsy?
I waited about 10 years from the onset of my symptoms to officially being diagnosed. I spent a further 8 years adjusting and trying out medication and lifestyle adjustments to be able to cope with and manage my symptoms. If someone doesn’t know what it is in the first place to be able to seek a diagnosis, this will add years to the time they will have to wait to feel better. People often wonder what the benefit of diagnosis is. I can tell you that being able to recognise why certain things happen to your body, despite not always being able to control them, is life changing from both a mental and physical perspective. People will have spent their whole life thinking that they were lazy and not good enough only to find out that their body was working against them the whole time, it wasn’t their fault. That in itself is worth being diagnosed for, even if you hate the thought of medication and life adjustments.
- Tiredness kills
You know those grim signs you see on the motorway saying ‘Tiredness kills’, well listen up people who roll their eyes at this. Research by National Highways in 2024 showed that driver fatigue may be a contributory factor in up to 20 per cent of road incidents, and up to one-quarter of fatal and serious incidents. Globally it is estimated that 10-20% of all road crashes are fatigue related. I would like to know how many of those incidents involve someone who has not been diagnosed or medicated for a sleep disorder? If you or someone in your life was involved in such an incident, I can guarantee you would be wondering why the person was driving in the first place undiagnosed, unmedicated or sleep deprived. Sleep disorders aside, the importance of sleep is still being disregarded in our society. Comments like ‘you can sleep when you are dead’ or ‘sleep is for the weak’….well you literally could die due to the lack of sleep. I’m not going to list more statistics, look up for yourself the impact of sleep deprivation on your heart, brain and overall health, it’s actually terrifying. What’s more terrifying is that people still think that it is not a vital part of safeguarding your health. People need to wake up and not just in a literal sense.
I wanted to post something today but i am ironically totally exhausted due to the condition i am trying to write about. It’s also 4 days to my period so yeah….nap time/rage time/sad time.
Christine out
xoxo