I wish I had a magic potion to get everyone to understand narcolepsy. In my experience, a few friends and loved ones will understand right away, others may take their sweet time, and some will never get it.
However, there is one person that you MUST get on your side: YO’SELF!
It’s so cheesy and cliché, I’m rolling my eyes writing this. Plus, it’s dumb. How could you not be on your own side? That’s ridiculous… Or is it?
In my book, Wide Awake and Dreaming: A Memoir of Narcolepsy, I describe my own self-realization about a year and a half after my diagnosis:
Speed walking to law school, my mind clattered with my usual inner dialogue, You’ve missed half of class, Julie. What the hell is wrong with you? Get it together.
Just outside the law school building, I closed my eyes and took a deep breath. The negative statements echoed in my mind and for once, I recognized this voice for what it was – poison. I’d been scolding myself for my every misstep since being diagnosed with narcolepsy. Self-criticism had motivated me to work harder in the past, but now, I was only hurting myself. With little-to-no positive reinforcement from others, beating myself up made no sense. If I wasn’t compassionate toward myself, no one else would be either. It had to start within.
Your circumstances are unique, Julie. Just staying in school is an accomplishment, I told myself.
This voice came out of nowhere. No one had suggested this, but I had a growing suspicion that outside of this bubble, and in the long run, staying in school with narcolepsy was a success. I wasn’t sure I believed this fully, but I had to try. I vowed to muffle the negative self-talk and joined class 40 minutes late, knowing I was doing my best.
After that day, I never talked badly about myself again and I lived happily ever after. Just kidding! 😉 The truth is, getting my own butt onto “Team Julie” has been a process, but here’s what I’ve learned:
1. Untangling feelings about ourselves from feelings about narcolepsy
Because narcolepsy often develops slowly and insidiously, we can go years without realizing that what we are experiencing are NOT character flaws or bad or lazy behavior, but actually symptoms of a neurological condition.
Plus, if you are anything like me, you may have used negative self-talk to keep yourself afloat while drowning in undiagnosed sleepiness. I described in my memoir a pre-diagnosis episode of excessive sleepiness:
The heaviness still sat on my skull. I tried pinching the skin of my forearms to wake up. I started slapping my face. With increasing intensity, I slapped myself again and again as hard as possible. These slaps were satisfying, not only because they woke me up, but also because they released a rage in me for not having the backbone and discipline to perform the simplest of tasks, of just… staying… awake.
Ugh, it’s hard to revisit this, even so many years later. 😐 But anyway, upon diagnosis, it’s only natural to be a hot mess of thoughts and feelings, and while there are no quick fixes, I would suggest considering trying to separate your feelings about yourself from your feelings about narcolepsy.
As far as your feelings about narcolepsy – I’d encourage you to do whatever feels natural. If it feels right to be angry at narcolepsy – go for it. Hate narcolepsy, scream at it, write “narcolepsy” on a punching bag and beat it up. Whatever it takes, get that anger flowing in an outward direction!
But try to consider that while narcolepsy can be bad, YOU are not bad.
You, my friend, are an amazing and determined person. In fact, you’ve been facing extraordinary invisible adversity for a long time, so that makes you a certified badass. Yep, I certified you, congrats, badass!
Starting a dialogue of compassion toward yourself is an important step, even if it feels fake or cheesy at first.
2. Talking back to your negative self-talk
In The Confidence Gap (I highly recommend the audiobook read by an Australian man), Russ Harris explains that negative self-talk is a natural part of our thinking process, passed down to us by our Flintstone ancestors. Instead of thinking we can get rid of it, he teaches techniques for coping with it.
His exercises seemed so silly, like singing my negative self-talk using the Happy Birthday song and using a Daffy Duck voice. BUT the very next time my negative self-talk joined me for real, I recognized it quickly, and burst out laughing because HOLY CANNOLI, IT WORKED!
Now, instead of thinking I can rid myself of negative self talk, I acknowledge it, thank it for its natural role and then say bye, Felicia! This has been life-changing. Check out some additional tips for fostering self-love with narcolepsy here.
A few disclaimers
- Getting on your own team is NOT a replacement for having other people on your team too. You deserve a larger support network of people who listen and share this journey with you. Tips for fostering your support system here. But I do hope this post is a good reminder that sometimes our loudest critic is the one living between our own ears.
- People with narcolepsy are often being told there’s more that they could do to improve their circumstances. Try this. Try that. Try harder. It’s honestly exhausting, and I’d hate for this post to be one more thing for people with narcolepsy to feel obligated to do or change about themselves. We are all on our own journeys and I’m not sure that sharing this can speed up anyone else’s process.
Perhaps, at the heart of this, I just want you to know that I think you are awesome. You deserve respect and acknowledgement for what you go through daily. Sure, maybe I don’t know you personally, but I bet that if we met today and talked for a bit, I’d reach the conclusion that you’ve gone through a lot and deserve to feel proud of yourself. I wish you could feel this every single day in your heart, because I’m pretty sure I’m right on this one. Thank you for considering my opinion!
Have you found ways to get yourself onto your own team? How might we celebrate being certified badasses? Share in the comments below!!
Special thanks to Michelle Zagardo for this beautiful feature photo. I’m wearing an amazing Lysande bandana (a headband without the headache), handmade by Michelle, a fellow PWN! So, if you’d like to add a little color or fun to your style, or have a mom, sister or girlfriend, I HIGHLY recommend purchasing one (or seven): https://shoplysande.com/!