November 7, 2019

My Narcolepsy Diagnosis Article in Belfast Live

 

Writing this blog is weird now as 1) it’s no longer anonymous and 2) it was me that outed myself haha. I just thought I would pause my story for a wee second to chat about how it came about.

After posting to my personal Facebook account accidentally from my blog Instagram I went through a variety of emotions. First of all I was confused like…hmm that says my name but my blog picture is there that’s not right…then this quickly progressed to panic..oh god what was it I wrote???. Of course, this post wasn’t just a picture of a tree or a coffee or a leaf or other thrilling posts that I put together , OH NO…it was when I had an absolute disaster of a week.

No matter how strict I was trying to be with my sleep schedule I wasn’t sleeping at the right time. I was taking my medication, naps, exercising, listening to motivational podcasts and just about every trick I had up my sleeve to keep me at my most awake, but it wasn’t working. When this happens I get so frustrated. I start thinking about how other people don’t adopt any of the routines that I have to keep just to stay awake and be functional. I start thinking life is unfair and go into old thinking patterns where I think about scenarios where I didn’t have this condition and what I could achieve. None of this is helpful though, its not going to make it go away and it certainly isn’t going to make me feel better. What use is listening to motivational podcasts if you are still holding on to your limiting beliefs completely unchecked? So I had a quick word with myself and just thought right you need to stop being so hard on yourself… I then thought about why I felt so embarrassed for this to post to my personal Facebook account.

I suppose I felt a bit vunerable because

  • I was admitting that I didn’t always walk the walk as much as I talked the talk about self care and it’s importance
  • I mentioned that I had CBT

Then my mind was like but SO WHAT? The only reason you are feeling embarrassed is because society still has this ridiculous stigma about mental health….and a stigma about your condition too. If anyone thought or said anything mean about it then they were just a mean person. I decided that I shouldn’t let the fear of what other people may think stop me from raising awareness.

When you talk about Narcolepsy in the public arena some people are like aww maybe you should like …*insert suggestion you’ve already tried here* or ‘aw well I’m so busy I barely have TIME to sleep’. They have no idea the hold Narcolepsy has over you. They have no idea how much you have to fight this condition. There is superiority to their time and if you’re sleeping then it must mean that you are weak, not busy enough or not important enough. Sleep is viewed as a luxury. Someone that’s tired and has to sleep a lot must be lazy. Hey maybe some people don’t think that – but you my friends, are sadly in the minority.

So I thought well I’m sitting here feeling helpless about the lack of understanding people have about my condition – maybe I should put something out there that will make them understand a little bit more. What’s the point of being annoyed about the misconceptions if you don’t try to do your part in raising awareness

From there I did a complete 360 in attitude and I spoke to Belfast Live ahead of World Narcolepsy Day. I have been waiting on society to change towards disability and mental health.. but why should I wait when I could speak myself and help to educate people on my condition so that people in future don’t have to go through what I have??

So yeah…that crazy train of thought was how I pushed myself out from behind my anonymous blog to having my Belfast Live Article…

You can have a read of the article below:

https://www.belfastlive.co.uk/news/health/narcolepsy-diagnosis-ni-woman-after-16956858

 

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