Narcolepsy Advocacy 101

Oh my gosh it’s been over a month since my last post, but now that my life is less pointlessly hectic I have time to think and write again! So today I want to talk about narcolepsy advocacy: what it means and how you can be an advocate in some capacity.

The word advocate can be defined as person who publicly supports or recommends a particular cause or policy. In the case of advocating for narcolepsy, it basically means that you are a person that works actively to make things better for people with narcolepsy. This can mean trying to raise public awareness through education, lobbying government for improved access to medications or services that we need, or speaking out against people that treat our condition as a joke.

I think it is something that is really important for us PWN to embrace. As a relatively small group it is hard for us to raise money for awareness campaigns etc., yet there are definitely enough of us out there to be raising awareness and making change on an individual level! I’m sure there are many of you out there who are already advocating without even thinking about it, and this post is just to give everyone ideas on how you can either start or expand on what you are doing to let the world know that narcolepsy is real and we want to live just like everyone else!

Here are a few ways that you can help out the cause by advocating for narcolepsy in your own life:

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1. Educating people about narcolepsy when they are being dismissive of your condition.

It is often tempting to just ignore people and try to continue on without “causing a fuss”, but letting people know when and how they cross the line is important to prevent them re-offending.

2. Encouraging questions.

If you are a person with narcolepsy and have a fairly good understanding of your condition, you are basically a walking, talking encyclopedia of knowledge that 99% of the population doesn’t have. I find that people are always curious about narcolepsy, and so I try to answer whatever questions they have no matter how silly or ignorant they may seem.

3. Sharing info on social media.

While you might not want to become one of those people who fills your friends’ feeds up with ten posts a day on the same topic, the occasional post about narcolepsy can be a great way to keep friends, family and other acquaintances informed without shoving information in their faces. (Lots of sharable graphics etc. on the Advocacy Tools page!)

4. Seeking out opportunities to share info in appropriate settings.

For example, I have heard of some people taking opportunities to speak in their workplaces on the topic of narcolepsy, which is such a great thing to spread the knowledge to people who may not have any connection to narcolepsy. Alternatively, if you are in school or university, you might be able to use narcolepsy as a topic for some of your assignments as a way to open up discussion with others in your class.

5. Respecting yourself and seeking special help when necessary.

This one I personally find difficult, as I can sometimes be so caught up in wanting to be independent and okay that I end up harming myself in situations when it would be reasonable to ask for help.

For example, if you need special considerations like nap time in a university exam, go ahead and ask for it.

Sometimes you will face difficulties with people not understanding the legitimacy of your requests, but for workplaces and educational institutions to deny you reasonable considerations is actually illegal, so keep fighting! Not only will you be leveling the playing field for yourself, but you might also make it easier for the next person with narcolepsy who comes along.

6. Standing up against people or groups who discriminate.

For example, I’m sure many narcoleptics will remember the Honda ad that aired last year making fun of people with narcolepsy. In response, the narcoleptic community came together, signed petitions, and got in contact with the organisation directly to tell them that this was not acceptable. In the end it turned out to be a good thing, with Honda apologising and sponsoring a narcolepsy PSA, so if you see anything that is offensive to you as a person with narcolepsy, let someone know!

As a general rule of thumb, if you can imagine replacing narcolepsy with any other condition (e.g. epilepsy) and think that it’s not okay, then its not okay.

Our perceptions are often warped as we have grown so used to narcolepsy being a target for lazy humour, I often don’t even realise how offensive some comments are until I use this test!

7. Keep in touch with the narcoleptic community.

Here I am talking about being active member of narcolepsy support groups (either online or in real life, or both!) and taking part in any events that might happen in your area. This should keep you up to date on any advances in treatment or new research that helps us understand our condition, as well as making you aware of other peoples’ experience of narcolepsy, not just your own.

It may also alert you to issues that affect you and might require your help, such as this petition we have going at the moment in Australia to put Xyrem on our Pharmaceutical Benefits Scheme. If you aren’t currently part of any groups I highly suggest it, you can read a bit about why and see my list of group suggestions here.

8. Promoting the importance of sleep and sleep health in general.

This might seem a bit tangential to the main point here, but I really believe that if people valued their sleep as much as they should, and realised just how important good sleep was for our physical and mental health, they would have a much easier time understanding how narcolepsy affects us so profoundly.

In summation: Just do your best and try to fit advocacy into your life whenever and wherever you can – the above are just to give you some ideas, but by no means feel that you have to do all or even most of them! Obviously many of us PWN lack the energy to go around actively pursuing advocacy opportunities, and some people are less comfortable sharing that information about themselves, but by taking tiny steps you can still be making an important difference!

If these actions seem like they are too small to have any impact, just think about this… The reason that most people don’t understand narcolepsy is because they only know what they have seen in movies. Sometimes all it takes is for one person to open their eyes and give them a little bit of knowledge. And who knows, that one person might be able to pass on some of that knowledge to one of their friends, who tells it to their cousin, and so on and so on… But if we don’t give people opportunities to learn in the first place, it is unlikely that they will learn through other means.

Even if you talk to one new person about narcolepsy each month, that is still one extra person out there who has some understanding, and slowly but surely they all add up! Especially when we are all out there raising awareness together 😉

If you have any questions or comments about anything in this post or in general, just drop me a comment below 🙂

xx Elle