The Downside to Awareness

June 9, 2011 in Opinion, Response by Jess

Read this first.

I subscribe to Google Alerts. It’s a great little gadget; you enter your search terms, and it will notify you whenever Google finds a new article pertaining to your keyword(s). I’m sure it’s obvious my favorite keywords would be “narcolepsy,” “cataplexy,” and the like.

Sometimes, I don’t bother to look at the articles. I have so much going on, and many of them are repetitive blog posts that are great, but really don’t help in my pursuit of content for Planet Narcolepsy. At other times, like today, I take a moment to check out the item, especially if the source seems like somewhere many of my members and readers might be looking for information.

That’s when I often end up disappointed. It seems as though for all the legitimate information that gets put out on the web about Narcolepsy, three more items get posted that apparently have no basis in fact whatsoever.

In the article linked above, from the very first sentence, I knew we were in for it.

“People with narcolepsy sleep disorder suddenly fall asleep while they are watching television or reading, and in some cases even while eating or talking.”

Um, no. “People” with narcolepsy do none of those things. SOME people with narcolepsy may do those things, but those of us who zonk out with no warning mid-chew are very few and far between. Way to start an informative article with a public misconception.

The second paragraph just got better, describing symptoms of narcolepsy that included “hallucinations during sleep” and cataplexy that may be “followed by strong emotions.”

In 12 sentences, including “For more information on narcolepsy, see below,” I counted no less than 9 factual errors, mostly generalizations and outdated assumptions.

The second page was slightly better, at least mentioning cataplexy can vary from mild jaw slackening to full body collapse, but didn’t earn any confidence with its repeated re-naming of the disorder. As a patient fairly well-educated on the subject, I am quite surprised to learn of subtypes of this disease, including Cataplexy Narcolepsy” and “Sleep Narcolepsy.”

Even more interesting, I was unaware there is a third type of wakeful-dreaming, referred to as “hypnologic.”

My amusement quickly became anger when I read further, learning about how by using medications and dietary measures, narcolepsy can be completely overcome. Why didn’t anyone tell me this?

After emailing the editor with a quick remark about non-factual information and as much sarcasm as I could fit in 240 characters, I thought for a moment on what it means to have pieces like this easily accessible to patients, families, and even physicians looking for information and answers.

It actually scares me that this article is published. It scares me that it can’t possibly be the only one full of half-truths, contradictions, and false hopes. Can diet improve symptoms? Sure. Especially if you have hypnologic hallucinations.

How can we educate those around us about our condition if when they want to learn more, they find information directly in conflict with what we’ve tried to explain to them? We fight every day to make clear that “tired” doesn’t begin to describe how we feel, and how mere sleep hygiene and fewer carbohydrates do not qualify as effective treatments, and yet here is a “News” article outlining simple ways to practically cure ourselves.

We must learn to be aware not only of what information we are putting out into the world about narcolepsy, but what information others are putting out into the world. When sharing articles, make sure proper citations are noted on the article. Make sure there are links to actual medical, clinical reports, and verifiable knowledgeable institutions.

Guess what? Even Planet Narcolepsy sometimes doesn’t count.

However, as part of our goal to spread awareness, we must include a goal to spread truth, and to remove the myths and misconceptions from being available at all.

With that in mind, I implore to you to go to the link above and contact the editor. Request the article be rewritten appropriately, or better yet, completely removed.

And when you see other articles and links to what amounts to stories and fantasy about our disease, I encourage you to do the same, and share with the rest of us.

Together, we can make a difference.

Apart, we are doomed to suffer hypnologic hallucinations “and other automatic behavior.”