Five Years Living With Narcolepsy: What I Would Tell My Newly Diagnosed Self…

This week, five years ago, I was diagnosed with narcolepsy. My five year younger self was so scared and unsure how “narcolepsy” would fit in my life. It was so unwelcome. If I could go back and whisper in my younger ear, this is what I’d say:

You will be okay. You are not alone.

You will face loss, heartbreak, anger, deep sadness, dark days. Keep going.

In the midst of the worst, you will discover your most beautiful fearless self. Keep going.

It will take you a while to recognized your new self and even longer for others to see it. Keep going.

You will free-fall totally unsure of where you’ll land. Keep going.

One morning, five years down the road, you will wake up in the shimmering silver lining of the cloud, knowing you are perfect this way, you are okay and you were never alone. 


  1. Alex Withrow on September 20, 2012 at 2:27 pm

    I love this. Great message here. Keep fighting, keep going.

    I’m so proud of you, on a multitude of levels.

    • julie on September 20, 2012 at 3:28 pm

      Thank you, Alex! Big smiles from DC, J Fly

  2. Debbie on September 20, 2012 at 4:46 pm

    Very inspirational! Keep going! 🙂 Have a great day!

    • julie on September 21, 2012 at 9:13 am

      Thank you, Debbie! Have a great day too!

  3. Gail on September 20, 2012 at 4:52 pm

    So happy you are in the silver lining! Enjoy the view from up there.

    • julie on September 21, 2012 at 9:13 am

      Thank you, my dear friend Gail!

  4. Michelle hemingway on September 20, 2012 at 10:15 pm

    SUCH a great message! Thank you for sharing so unselfishly!! So proud of you!! Love you, Julie!

    Keep Going!❤

    • julie on September 21, 2012 at 9:14 am

      Michelle, your comment means so much to me. Thank you so much for your kind words. Big hugs and smiles, Julie

  5. rebecca on September 21, 2012 at 1:13 pm

    …and you were perfect all along. you shimmer in your writing and give all
    of us reason to keep going and hoping.

    • julie on October 1, 2012 at 1:37 pm

      Thank you so much, Rebecca! That means the world to me. Big smiles, Julie

  6. Lawrence on September 22, 2012 at 9:58 pm

    You’re my inspiration….

    Wonder where I’ll be in 5 years? It’ll be just over 3 months when I show up at the conference….

    • julie on October 1, 2012 at 1:39 pm

      Thank you so much, Lawrence. You’re a strong insightful person and I feel lucky to call you a friend. See you at the Narcolepsy Network conference!

  7. Lelia on September 29, 2012 at 3:02 pm

    Julie –

    Wow 5 years?!?! That’s crazy!! When you’re tired it drags, when you sleep it speeds up but when it all comes down to it, time flies.

    You could also tell yourself:
    You will find a way to fight for yourself and become the voice for ALL Narcoleptics. You will be seen as a role model, an inspiration and give hope to many.

    I love your spirit!!

    Keep Going!!


    • julie on October 1, 2012 at 1:43 pm

      Lelia, I never imagined that my journey would inpsire others. I feel so blessed for all the support and friendship I’ve received along the way from kind wonderful people like you. Thank you so so much. Big smiles, Julie

  8. CHRISTINA WEAVER on November 6, 2012 at 11:31 pm

    This succinct perspective is well written. Your view of Life, the equanimity with which you face your obstacles, astonishing. You’re less than half my age; I wish I had your courage- such resilience- in facing my own illness. Last week, I came across something your father wrote to me about you circa 1996. His pride in you fills my eyes with tears as I write now. Thank you for your inspiration.

    • julie on November 11, 2012 at 3:10 pm

      Hi Christina, Thank you so much for your kind comment. Cheers, Julie

  9. Nikki on March 4, 2014 at 6:03 am

    This brought tears to my eyes. It has been just about 4 years for me and all of the above is so true. It has been such a journey that few can relate to which makes it tough but amazing at the same time. 4 years ago there was no where near the amount of information and support there is now. Thank you so much for having the heart, determination and love for us to keep us reminded that we are not alone. You are an inspiration and I am behind you 150%.

    • julie on March 4, 2014 at 6:08 am

      Thank you so much, Nikki! Your support means so much to me. 🙂

  10. greg on November 18, 2014 at 12:47 am

    is this a site just for women?

  11. Stephanie on January 15, 2015 at 7:16 pm

    It is encouraging to read this right now although I admit I have to fight to make myself believe it at the moment. It’s just been a rough exhausting week and I am left feeling like I have let my children/family down. I am clinging to any piece of hope I can find right now. I have felt very much alone on this journey so far. I thank you for sharing your story and giving those of us who feel invisible a voice! I hope I can Be awake enough to do the same one of these days.

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