Poor public perception of narcolepsy and its possible impact upon sufferers

When I started researching the subject of narcolepsy again recently, I was surprised to find a mixed bag of developments since my diagnosis nearly eleven years ago. Medically there had been remarkable advances - greater research, more clinical trials (including a human trial) and a much greater understanding around the cause of this neurological condition.  Awareness and public perception however, appear to have advanced at a much slower, snail-like pace. Perhaps my expectations are unrealistic, but then again eleven years is an awfully long time...

This startling realisation is pretty much the driving force behind this blog. It was only a couple of months ago that I stepped out of the sleepy closet myself, after hiding my symptoms and the on-going struggle to receive appropriate medical support from most people in my life. If I was hiding, how many others were doing the same? It didn't take long for the sociologist within to demand understanding around why so many of us struggle to speak openly about our struggles. The answer sat quietly waiting to be read in one of Brene Browns books.

Anyone who has heard of the guru that is Brene Brown (a Research Professor with a working background in Social Work), will be very familiar with her lengthy research into the area of vulnerability, shame and fear. I'm not one for reaching for the self-help books, but bought the The Gifts of Imperfection after viewing one of Brene's TED Talks. One paragraph stood out, as if it had been specifically written for my eyes...

"Shame is all about fear. We're afraid that people won't like us if they know the truth about who we are, where we come from, what we believe, how much we are struggling"

Cue light-bulb moment! All these years I wasn't just embarrassed. I'd actually harboured fears that my symptoms would spark judgement in others, which would impact upon their degree of acceptance towards me. Time had allowed this fear to fester until it resembled self-driven shame, with symptoms being something to hide. How many others have gone through this process of thought? 

Is the lack of accurate public awareness and associated stigma with the condition one of the main contributing factors to this fear of judgment? Would a greater public understanding regarding the severity of the condition and its true implications change disclosing behaviour of PNW? Would we feel more comfortable speaking out about our struggles and limitations if this fear of judgement was minimised? This fear certainly feels valid, particularly as recent research has stated that: 

"Despite the serious nature of narcolepsy, Americans mispercieve its severity compared to other diseases of similar health concern or prevalence..."

"...only 50% of Americans understand the significant health impact of narcolepsy"

It seems that we're currently caught within a vicious cycle - individuals with a diagnosis are reluctant to share information due to public perception and associated stigma, yet a change in public perception  and stigma eradicated cannot happen until experiences are shared. 

I've created the Narcolepsy / Cataplexy Education Focused Group on Facebook to address the continual inaccuracies that contribute to the stigma of narcolepsy. As an open group, every post, comment and like offers members an opportunity to educate their Facebook friends and challenge the stigma associated with narcolepsy. My hope is that this continual drip-feeding of accurate information will eventually help change attitudes, so that those struggling feel that they can openly discuss their difficulties, without fear of judgment. Fear breeds shame and no-one should feel ashamed to be a person with narcolepsy.