Rare disease day – where do I fit?

Today is rare disease day.

My Facebook wall is filled with moving and inspiring stories from people with rare (and in most cases invisible) diseases. As I read them all an all too frequent thought enters my mind…where do I fit in?

Over the past 2 years I’ve been put in a range of boxes: ME/CFS, narcolepsy and EDS. But I never fit nicely into these boxes, it’s like I’m just shoved in with not really enough room to really fit in there. Each diagnosis I’ve received has been shadowed with a “it’s close enough to what you’ve got”. So whilst I have these diseases to relate to, the truth is…none of them are a definitive answer to my 12 years of questions.

I know I should be thankful that none of my symptoms are individually bad enough to fully classify me as having these diseases, but it is human nature to yearn for a sense of belonging. Of course I’d much prefer to belong into the “healthy” group, but short of that…I’d like to belong somewhere.

With each diagnosis I’ve joined a number of Facebook support groups. Of these groups, only one feels like I belong. It feels like home. So with that group in mind, today I will discuss narcolepsy.

Narcolepsy isn’t a lack of sleep. It isn’t psychological. It isn’t like in the movies. Narcolepsy stems from a loss of cells within the brain (and no, I haven’t killed off my brain cells and I’m not brain-dead). This particular part of the brain helps to regulate the sleep/wake cycle among other things. So instead of daylight telling my brain that it’s time to be awake and night telling it it’s time to go to sleep – it works off its own system that it appears to just make up as it goes along. With the aid of stubborn determination and very powerful medication I get through the day without falling asleep. So while I may appear alert and capable of getting through a day with ease, the truth is, for 12 years I’ve worked my way to an Oscar worthy performance of being “awake”.

There are only a select few who have seen what has become the “real” me. I don’t hide my true feelings and pain from you because I don’t trust you, I hide it because I don’t want to be that person 24/7. I live with the fear that if I cave into these diseases, then I won’t ever leave my bed and I’ll be trapped.

I much prefer being the best damned actress I can be and enjoy and live life to the best of my ability.


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