Supporting people with narcolepsy. What friends and family should know.

Having support from family and friends is important in narcolepsy.

Friends and family play a key role in supporting people with narcolepsy and helping them to best manage their symptoms. Julie Flygare (narcolepsy advocate and writer) and Dr David Cunnington (sleep physician) discuss what friends and family should know and things they can do to help.

Audio Timeline:

• 00:00 – 03:02 What should family & friends know about narcolepsy?
• 03:02 – 04:43 What do family & friends have trouble understanding?
• 04:43 – 06:57 What can people do to help?

Julie Flygare

Julie Flygare, JD is the founder of Project Sleep, a leading narcolepsy spokesperson, published author, blogger and runner diagnosed with narcolepsy and cataplexy in 2007.  In December 2012, Julie published “Wide Awake and Dreaming: A Memoir of Narcolepsy,” She currently lives in Los Angeles and serves on NIH’s Sleep Disorder Research Advisory Board.  Recently, Julie created the Narcolepsy: Not Alone international awareness campaign to prove that narcolepsy is REAL and that we are NOT ALONE, with over 1,000 photos from all 50 US States and 35 countries around the world.

Related posts and links:

• What is narcolepsy?
• Wake promoting medication for narcolepsy 
• Julie Flygare’s ‘Rem runner’ blog on narcolepsy
• Narcolepsy Support Australia
• Stanford Center for Narcolepsy

Transcript:

David Cunnington: Julie, we’ve had a great day today and I really enjoyed just hearing about narcolepsy and the experience for you and what you’ve learned over the years.

What people tell me is when they get a diagnosis of narcolepsy, family and friends really want to help. But sometimes it’s hard to communicate what help people want or how family can support them.

Julie Flygare: So it’s really an important issue. I think especially as a person that’s newly-diagnosed, it’s not easy to know exactly how someone can really support you. You have some friends and family that aren’t even looking to support you. They don’t even understand.

So it’s important for friends and family to know that narcolepsy is a serious condition and that the patient is going through a life-changing event. It might be invisible on the outside to some extent but it’s a very big adjustment period and it can take years to really – I mean I’m seven years in the diagnosis and I still feel like I’m learning good coping skills every single day and learning more about myself and how to manage my illness.

So taking the approach that basically it’s not going to be – even with the best treatments, it’s not going to be cured tomorrow. But we are going to work together as a team to continue making adjustments and improvements over the years and that you really can succeed and do a lot with your life, with making some adjustments and having a good team approach.

I think for a person with narcolepsy, it’s important to think about the sleepiness aspect that the person has to go through these – they’re going to be tired during the day and even with the best treatment, that still might happen. So for me I take one or two naps every single day and it’s just not like average sleepiness. It’s really – it’s a very heavy call to sleep that I experience and it’s this neurological process that my brain has to go through.

If you think of it like that, it’s a medical process that’s really important. You have to prioritise the naps and for a family member or friend to be flexible to that and it’s usually not too long. So it could be a 15, 20-minute nap and maybe it does disrupt some plans or something. But it’s extremely important for the person’s health and so helping them not feel guilty about having to do that, because a person with narcolepsy, you already feel so guilty about it.

You don’t want to nap instead of going out to dinner with friends. Why would I want to do that? So making sure – reassuring the person with narcolepsy that it’s OK and we’re going to work around this is really helpful.

David Cunnington: And you talk to lots of people who have got narcolepsy. What are some of the things they tell you that – oh, I just wish my family would get this. There are things they don’t really get. What are some of the things people tell you about?

Julie Flygare: I think they just feel like they’re misunderstood in general, that the sleepiness that some friends or family might think, “Oh, I’m sleepy too. I feel sleepy after lunch.” It’s just so different for a person with narcolepsy. So I think that’s probably well-meaning, trying to find a commonality of experience. But in this case, the sleepiness of narcolepsy is just so severe and so different than the average person that just acknowledging the severity of that experience is important. I think the hallucinations and sleep paralysis, average people can have that experience at times in their life. So that can be an experience someone has had that doesn’t have narcolepsy.

And that can be good. But it’s important to know it’s not just like a bad dream.

It’s a really – it could be a very disturbing experience. It’s so real. It can almost feel more real than reality and to acknowledge that someone that has experienced that has gone through like a very traumatic experience. If it’s a bad hallucination, the person has really gone through something very serious even though it was not real in our sense. But acknowledging that and not just saying, “Oh, you just had a bad dream.”

David Cunnington: Yeah. And then thinking about what people tell you or your own experiences, what would be an example of things that family have done that have been really helpful and – or people say, “My family got this and they’ve done that, and it just really made a difference.”

Julie Flygare: I know for me something that has helped is that if you’re looking at a full day event, like going home for Thanksgiving or something or going to a friend’s house for Thanksgiving. So you’re not in your own environment or you’re going to go – I went to a music festival all day and just trying to think a little bit logistically of how that’s really going to work to be able to take a nap.

So for instance if I’m going to a friend’s house for Thanksgiving, I feel really uncomfortable. Like, what am I going to do? So the friend could mention, “Hey, you know, there’s a backroom. There’s a back bedroom no one is using and you’re welcome to go take a nap.”

They don’t have to make a big deal of it. I don’t want everyone to know or talk about it. But that invitation makes me feel a lot better.

And also just being really flexible with plans.

David Cunnington: I know that even in my own family, I’m sometimes a bit rigid with plans and flexibility is not something that comes naturally to me.

Julie Flygare: Right.

David Cunnington: But a lot of people I see with narcolepsy do find they need a bit of that.

Julie Flygare: Yeah, you need a lot of it. And I still feel like I can fit a lot in the day but I have to be able to have – sleepiness has to be – to be able to take the nap when I feel sleepy is so important because it’s going to make the other time so much better. So if I try to push through and say, “No, I don’t need it. I can do it. I can keep pushing forward,” my mood is going to get so much worse and my ability to really take part in whatever is happening is just not going to be nearly as good. So that’s I think one of the hardest parts is really prioritising your time, doing the most important things during your best wakefulness and then having flexibility about evening plans and social things. Social things should be fun. You shouldn’t have to feel forced to go do something just to socialise.

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