Sunday, August 25, 2013

What if I didn't call it narcolepsy...?

What if I said that I suffer from a neurological condition, with symptoms frustratingly rendering me unfit for driving and working? What if I said that my body attacked an area of my brain and that it is now damaged beyond all repair? What if I said that this area of the brain causes me problems with my appetite, mood, sleep, memory, and everyday cognitive functioning at times? What if I said that everyday I walk around in haze, feeling like I've not slept for 48-72 hours and that consequently I have an energy budget that requires careful managing; prioritising areas of need in my life? What if I said that my body is at risk of feeling limp and at the point of collapse at times when I laugh, cry, argue? What if I said that this condition is linked to other autoimmune illnesses and that I now have a collection of as well, that are painful and make walking difficult at times? What would your reaction be?

Now what if I'd said I have narcolepsy and cataplexy instead? Both descriptions are factually correct....so please ask yourself, how different would your reaction be to each of them? How understanding would you feel towards mine and other difficulties and limitations in comparison to other chronic conditions?

Words are loaded with assumptions please make sure yours are correct :)





4 comments:

  1. Claire,

    Very accurate, factual, and moving article. You raise an excellent point, as the name Narcolepsy suggests narcotics in its common usage of the latin origins.

    Keep up the great writing!

    Regards,
    Brad Mann of @SleepingWithMS

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    Replies
    1. Thanks for your support and taking the time to comment. It's really appreciated :)

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  2. Awesome Claire! I'm going to be sending this to a lot of people.

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