The F Word

by julie on December 6, 2011

p14 The F Word
 

The F word is my favorite word and the subject of today’s post. 

“So what is narcolepsy exactly?” someone asks.

A thousand words race through my head.  If I was a computer, my screen would freeze at this point. System non-responsive… I spit out a few nonsensical statements and then shut down. Communication failure.

Truth is, narcolepsy is many things: symptoms, medications, side-effects, quality of life, brain cells, scientific processes, dreams and nightmares.

Where do we begin? How do we avoid system failure?

In a previous post, I offer a few basic communication guidelines:
1. Keep an upbeat tone
2. Leave out big science-y words
3. Less is more – I limit myself to 1 or 2 sentence responses and let people follow up if they’re interested.

To follow these guidelines - the F word comes in handy:

F is for FASCINATING

Narcolepsy is a fascinating disorder. The symptoms are fascinating. The science is fascinating. (You don’t have to say “fascinating” over and over, but you get the point.)

f12 The F Word

Think of this as the trailer for your movie.

Someone asks, “What’s it about?”

If you say, “It’s about a terrible illness with no redeeming qualities that no one cares about or understands.”

Do you think people will line up outside the theater to see that movie?  Would you? I wouldn’t. Life is busy and stressful and everyone has problems and hardships of their own.

Entice them. 

By describing narcolepsy as fascinating – you are saying, “I know something cool that you don’t know…”

Once they buy a ticket – you can get into more serious stuff.  Is this false advertising? I don’t think so.

Narcolepsy is truly fascinating. In later posts, I will discuss how to balance the gravity and seriousness of the disorder with the redeeming qualities that will make everyone glad they attended the movie.

——–

Note: This post is derived from my communications presentation, “Advocating for Yourself and Your Health” at the national Narcolepsy Network Conference 2011 in Las Vegas. I received overwhelming positive feedback about this session, so I’ve decided to share key nuggets of wisdom here…  My secret weapons, if you will.

Thanks so much for taking an interest in raising awareness about narcolepsy!

{ 5 comments… read them below or add one }

Valerie @ CityLifeEats December 6, 2011 at 8:16 pm

This.is.brilliant :)

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Saraiah December 6, 2011 at 10:00 pm

It is brilliant. I love the idea so much because narcolepsy truly *is* fascinating. The fact that some of us dream at times while awake is amazing. The leaps that have been made in understanding the brain as a result of studying narcolepsy are amazing too.

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Julie December 7, 2011 at 9:53 am

Great post! I loved your presentation in Las Vegas. You definitely made me rethink how I approach this daily question :)

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sbeaulieu December 13, 2011 at 12:21 pm

love this post!
it's exactly how i go about it
i say enough to tell them what narcolepsy is, but leave it hanging where there are questions to be asked if they truly are curious or care to know more about me. the people who ask the most questions i love. i enjoy spreading the word on such a fascinating topic!

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Keith R. December 20, 2011 at 10:41 pm

Thank you! This made me realize how fascinating my new life will be. 8 weeks diagnosed. Pretty cool that part of my treatment is taking daytime naps!

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