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Re: Two days with Nby alanna (no login)
It's a strange feeling when you suddenly realise that there is a name for this, it is a real thing, and it isn't normal. It is strange to realise that you have been in denial. I am so happy for you to finally have the necessary information to move towards understanding and acceptance - it's an unusual condition to adjust to, because it is so invisible and misunderstood.
I am 22 now and was diagnosed at 19. Your description of studying and working and even driving with narcolepsy pre-diagnosis rings so true to my own, and I also feel such relief for you that your friend(s) are understanding and supportive like mine have been.
Most of my friends/family see it as a bit of a fun novelty - they tease and joke, but are fiercely protective of me. This is great because it is still a novelty to me too - sometimes I forget to account for it and give myself the necessary breaks, or I forget my meds and can't drive home, and somebody will always offer their couch. Making it a part of your life, without letting it dominate in a negative way, is critical!
This invisible disability is hard to understand and harder to explain, but you will get there. Maybe one day I will too. Set goals for yourself like you always have, but also allow yourself to recognise achievements in context - my highschool marks feel like much greater achievements when I look back with the understanding of what I was struggling against.
As a young person, it can be hard to suddenly feel like your body doesn't work properly and your aren't in control. This has been the hardest part for me - my self-concept has always been very healthy, active, busy. Perhaps you won't struggle with this at all, or perhaps it will be your biggest hurdle.
Whatever you find the most difficult or the most trying, I wish you all the best on this very confusing, sometimes isolating journey. My thoughts and dreams are with you, my sleepy friend. x
Posted on Jul 3, 2012, 5:46 AM
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