Something has got me all annoyed today – this article about narcolepsy – published in one of the two major newspapers in Australia, the Daily Telegraph.
This was brought to my attention by some others on Facebook, and has prompted the age old debate that pops up whenever narcolepsy is mentioned in the media: What is good or bad for narcolepsy awareness?
As narcolepsy is such a variable condition, an explanation of one person’s experience is never going to be relatable for everyone. The same thing happened when Sarah Elizabeth’s video of her narcolepsy and cataplexy attacks went viral: many people with narcolepsy felt that while the exposure was a good thing, they found that people around them were now questioning the reality of their condition for not being as extreme as hers.
In Sarah’s situation I think the impact as a whole was positive, especially since she took the opportunity to use her video to spread the word, even speaking on the US TODAY show and a Reddit AMA about her condition. She made the effort to talk about the different symptoms and aspects of narcolepsy, making it easier for people to understand the impacts they have on her life, but also the lives of PWN in general.
In contrast, I feel like the article in the Telegraph was a massive wasted opportunity. There is some information in there of course, but the average person who knows nothing about narcolepsy is going to come away from reading this with some very misguided ideas about our condition. I don’t want to invalidate the experience of the subject, as every narcoleptic has their own life, but I would like to point out some parts of the article that leave something to be desired in terms of providing basic facts…
For example, the weird way that the article focuses on the fact that emotions can trigger sleep attacks, but doesn’t mention that MOST cataplexy attacks are caused by these triggers. Or the way that she describes instances of cataplexy as her limbs “falling asleep” (which is fine if that’s how it feels to her, but the article does not make that distinction).
Other weird points are when they choose to add sleep paralysis to the list of symptoms but ignore hypnogogic/hypnopompic hallucinations (NOT the same as “scary dreams”), the way that she talks about going straight into “deep sleep” (just plain wrong as they should be talking about REM – not deep sleep which is the phase that we desperately lack!) and her comments about never having to worry about insomnia are confusing at best when most people with narcolepsy actually have disturbed sleep at night.
Again, I know that it is an article about just one girl, but when the article is using her as an example for people with narcolepsy in general, I think we should expect a journalist to at least fact check what their interview subject is saying and avoid some of the pretty basic errors made here. It would also be common practice to include some information and statistics about narcolepsy in general, to give people a big-picture idea of narcolepsy as a condition.
When you combine all of that with the “sleeping beauty” headline and the “sleepy model” stock photos… well, you can colour me unimpressed with this particular article.
Don’t get me wrong, I think it’s better to have this article than no article, but I do think we have a right to expect better representation. We shouldn’t excuse lazy journalism just because it would take someone half an hour to gain a proper understanding of the actual symptoms of narcolepsy. Heck, they could have found most of the information they were lacking on one of my infographics!
Just because narcolepsy is a condition that not many people have heard of, doesn’t mean that we should take any interest as a positive. As we saw with the Honda Ad controversy last year, we don’t have to accept any reference to our condition as a compliment – not when it ignores the facts and further fuels other people’s misconceptions.
Increased awareness is the key to moving forward, but only when that awareness is paired with factual information that allows people to actually understand what the condition is.
Got an opinion on the article, or Narcolepsy Awareness in general? Maybe I’m being too sensitive, or expecting too much from journalists? Write a comment below 🙂