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 🙂
x Elle
This is a great article. I love that you emphasized that it is different for all of us. There are many varying degrees of symptoms as well as how we are all affected.
Wonderful article, Ellie! It shows how much thought you put into your efforts, which I’ve always been a huge fan of! You’re such an amazing artist and communicator. I’m so glad to call you my narcolepsy co-advocate!
I’m very particular in how I communicate with the media but it’s much more of an art than I ever imagined before I started getting involved in this space. When I first started, I somewhat trusted that the reporter would do their homework, now I assume nothing of the sort.
However, I also have to balance this with being kind and grateful (even when really disappointed with the final product), because it’s good to build strong media contacts for one’s long term aspirations – if you hope to be in this game for a while and grow one’s efforts.
There are a few “ground rules” that I set with any reporter in advance (the only time that you truly have power is before filming or interviewing. After they have what they need, you generally lose all control over the final product).
Messaging also really depends on what you want out of the article. Do you want the government to pay for treatment given the H1N1 flu vaccine? Or do you want people to know narcolepsy is serious, but that there are ways to cope well through treatment and connecting with other PWN. Both messages are valid – but this will highly influence how you present your experience.
I’d say every single piece of media coverage I’ve been involved with has had errors or word choices that I do not like. I cringe when I read some of it. I cried hysterically one major media piece came out this past year that I’d put a lot of time and energy into. Ultimately, the piece was very well received by others even though it didn’t meet my standards.
Lastly, I personally make a very clear distinction between proactive and reactive efforts. Proactive efforts are contacting the media to tell your story, creating infographics and campaigns. Reactive efforts are responding to the actions of others – like Honda or Homer. There’s so much misinformation out there, one could wage constant battle in reactive mode, but I’ve personally found that most of it is not worth it – it’s defensive and meeting people on their playing field. It’s also just filled with negative energy for me which gets me down. So I personally prefer to almost strictly focus my time and attention on proactive efforts, where I set the terms on my playing field from a place of confidence. Both efforts are valid and important and I’ve clearly broken my own rule on occasion, for Homer and Honda, but I try really hard to stick to proactive efforts. :-)Sorry for writing so much! Clearly your article really sparked my interest!