Meet Our Advocate - Elle Wales
At Narcolepsy.Sleep-Disorders.net, we are thankful for our amazing advocates who share their experiences of living with narcolepsy. In our advocate spotlight interview series, we get to know our advocates better and find out why spreading awareness of narcolepsy is so important to them.
What is one thing you would like to share with the community?
I'm obsessed with podcasts and am usually listening to one at least a few hours out of every day. I even listen to them in the shower! I love a diverse range of subjects including psychology, comedy, astrology, and politics. I developed this habit at a time when my symptoms were far less controlled, and hearing other people's voices often helped me to stay more alert.
I'd use them to help get through chores, walks, and commutes. These days my daytime sleepiness has improved a lot, but my podcasts are still going strong!
What does advocacy mean to you?
My advocacy has been such a driving force in my life. It became a valuable source of pride and fulfillment, at a time when most of my life felt very adrift.
Since then, advocacy has led me in so many directions; from meeting great friends to gaining new skills, and even inspiring me to change careers! It helped me realise that supporting others going through hard times was my biggest passion and that I could actually succeed in that type of role.
What do you wish someone had told you when you were first diagnosed with narcolepsy?
I wish someone had told me that I wasn't alone, and that it was normal for me to feel the way I did in response to all the difficulties that I'd faced. It wasn't until I finally started connecting with other people with narcolepsy that I started to see my problems weren't personal failures, they were part of my symptoms.
I also wish someone had told me to see a psychologist. I carried a lot of grief and anxiety surrounding my diagnosis, but it was almost a decade later by the time I started working on it!
What brings you the most joy (especially when you’re feeling down)?
Being creative is a huge outlet for me. I've been an artsy person since I was a kid, and it always helps no matter what mood I'm in. I feel like it connects me back to who I am at my core, and can let me release some of the emotions that I don't even have words for yet.
Where do you find support?
I think support is best when shared around. My family has always been one of my biggest supports. They know how narcolepsy affects me daily, beyond what people see in public. I also have great friends, who always check in when I seem like I might need a nap! My partner is an absolute gem, and coming home to him every night makes everything else seem bearable. Last but not least is my narcolepsy community, so many people from all over the world who just get me in a way no one else can!
What is the last show you watched that you enjoyed?
Search Party Season 4
What is one meal you could eat for the rest of your life?
What is your favorite quote or saying?
"Feel the fear and do it anyway"
Do you relate to Elle's narcolepsy experience? Say hello to Elle in the comments below!
Do any of your family and/or friends also have narcolepsy?