What You Absolutely Need To Know When Reporting On Narcolepsy

Ever been put off by a headline, but felt compelled to read the post? Yup. That was me when I happened upon the article, A Day in the Life of a Narcoleptic. I’m usually really put off by the term “narcoleptic.” It can sound very negative and soooo passé.

I don’t think describing someone by their disease is respectful. Personally, I prefer to use a phrase like “a person living with narcolepsy.”

It’s more empowering, don’t ya think?! But, to my point, despite my disdain for the term, I decided to read the article because I know some amazing people who are living with excessive daytime sleepiness, EDS, associated with narcolepsy and cataplexy and I thought I could learn from it.

And I’m so glad that I pressed on; what a compelling read! Here are 4 reasons why it’s an important article:

  1. The author, Steven Jackson, hit the nail on the head because he took the time to scratch beneath the surface when he interviewed Julie Flygare, who’s been living with narcolepsy since she was about 22.
  2. Instead of portraying her as a victim, or a freak, he was clinically factual about narcolepsy and cataplexy and so respectful and realistic in describing the highs and lows of her experiences. But, at the same time, I’d like to know more about Julie. Has she become her own health advocate? Does she have any tips or words of wisdom to share with others in the narcolepsy community? And although Steven referred to Julie’s treatment, sodium oxybate, commonly known as GHB, a “date rape drug,” which didn’t sit well with me–because, again, it just perpetuates negativity–I’ll give him a pass.
  3. He not only interviewed Julie, but he also interviewed her boyfriend and a neurologist from Harvard Medical School, which I thought was compelling.
  4. Hearing all three perspectives really helped me to better broaden my knowledge of the disease, and now, I’m on a quest to learn more!

 

Lady Kehveen Abernathy

Lady Kehveen Abernathy

Lady Kehveen Abernathy, of noble birth (or so she’d like to believe), is what many would call a youthful “old soul.” As a self-proclaimed “caregiver to the world,” impassioned about life, triumph, and all things beauty, Lady Kehveen strives to love others, seek understanding, and most importantly, spread awareness. But don’t let her sweet demeanor deceive you. Dressed to the nines over corset and petticoat, she’s made it her mission to defend the innocent and fight all things evil on this Earth. And being no stranger to chronic disease, she knows exactly where to start.

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