8 Years Since Narcolepsy Diagnosis: No Longer “Suffering the Silence”

by julie on September 18, 2015

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Living in Silence:

Eight years ago today, on Sept. 18, 2007, I was diagnosed with narcolepsy with cataplexy, a serious chronic neurological disorder of the sleep/wake cycle.

I told friends and family right away. Finally, I had scientific words to describe my mysterious symptoms. But I hated people’s reactions. Some acted as if I’d said I had a cold. Others laughed in my face.

So I stopped telling people and kept my narcolepsy private. This was convenient, as narcolepsy was an unwelcome addition in my life, so by ignoring it, I subconsciously hoped I could somehow ignore it out of existence.

“From most people’s perspective, there were no signs of illness or struggle written across my forehead. I brought the act to law school, diligently planned and orchestrated the disguise, playing the part of the perfect young woman I wanted so badly to be. It never tranformed me into healthy again, but it kept my dignity high, even when I was sweating, gagging and terrorized by my hidden side of life. I wiped away the spit, sweat and tears in the bathroom. I fooled them all, but I was also fooling myself.”  -from Wide Awake and Dreaming: A Memoir of Narcolepsy

I ended up living a double-life – lost and alone with narcolepsy, and mad as hell.

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Caught in a Catch-22:

After two years of silence, I realized I was caught in a catch-22. I didn’t like people’s misconceptions of narcolepsy, so I didn’t talk it. So people kept believing their misconceptions and I kept silent.

Someone had to break the silence and speak up about the real experience of living with narcolepsy. I decided to be that someone.

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Breaking the Silence:

Six years ago, I started speaking up and I haven’t stopped since. I like to say I caught the “advocacy bug” – the best chronic condition in the world. Sharing my story has become my favorite thing in the world to do now. I love the intellectual challenge of changing perceptions, either through my writing or speaking.

My advocacy has taken on a life of its own and made my life with narcolepsy worth living. Looking back, I’ve accomplished more with narcolepsy than I think I ever imagined for my lifetime.

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Eight years later:

While narcolepsy continues to challenge me daily, I keep learning better coping skills. Now, narcolepsy isn’t nearly as overwhelming and maddening as those first few years, I am much more at peace with it (not entirely, but most days!) and I believe this is because of two things:

1. Letting go of self-guilt and embracing narcolepsy as a part of me that I work with, not against, to succeed in life.

2. Finding support – with time, I’ve acquired a support system of amazing people who understand and accept me as I am. This network includes friends, family, co-workers, fellow people with narcolepsy I’ve met in person and through the NARCOLEPSY: NOT ALONE campaign.

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Joining Suffering the Silence:

Today, I am celebrating eight years since diagnosis by representing NARCOLEPSY: NOT ALONE in the Suffering the Silence movement.

“The stigma surrounding chronic illness can leave people feeling misunderstood, alone, dismissed, and silenced. When someone doesn’t look visibly sick, one can often forget what their life is like behind the scenes. We will no longer suffer in silence.”

This is the powerful message of Suffering the Silence, an online community raising awareness of chronic and invisible illnesses, started by Allie Cashel (living with chronic lyme) and Erica Lupinacci (living with lupus). Suffering the Silence: Chronic Lyme Disease in An Age of Denial is also a new book out by Allie Cashel! I was thrilled to attend Allie’s book signing this week.

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The photo series began with eleven portraits of New Yorker speaking out about life with chronic illness, breaking their silence and painting a living portrait of what it is like to live with chronic disease.

The campaign has gone viral and I’m thrilled to join. You can join too, let’s break the silence!

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Thank you to Alex Withrow for taking these beautiful and deeply meaningful photos. I chose to the backdrop of Colette Miller‘s gorgeous angel wings in Koreatown, Los Angeles, to represent my personal transformation from silence to freedom; from fear to flying proud with narcolepsy.

“DON’T BELIEVE WHAT YOUR EYES ARE TELLING YOU.
ALL THEY SHOW IS LIMITATION. LOOK WITH YOUR UNDERSTANDING,
FIND OUT WHAT YOU ALREADY KNOW, AND YOU’LL SEE THE WAY TO FLY.”
-RICHARD BACH

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{ 11 comments… read them below or add one }

Kelly Bell September 19, 2015 at 1:13 am

Once again, bravo. And thank you.

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julie September 19, 2015 at 10:19 pm

Thank you so much, Kelly!

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Kathy Flygare September 19, 2015 at 11:44 am

I’ve known Julie all these years and I am so proud of how she has transformed through her advocacy for not only her disease but those other diseases that are misunderstood and under researched. Brilliance isn’t about how smart you are but more about how you use it. Bravo. Love you. Kath.

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julie September 19, 2015 at 10:20 pm

Kathy, It’s been a long journey for sure and I appreciate your support and care through it all! Love, Julie

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Gail Pean September 19, 2015 at 6:25 pm

Julie,
Thank you for sharing your personal journey from denial to acceptance and celebration of life with a chronic illness. I have seen your transformation and witnessed your growing pains, joy and sadness. You have suffered great personal losses emotionally and financially but always had faith in your convictions to spread knowledge and support to others. You are truly an angel on earth. I am so proud to call you my friend. Congrats on all you do and will do for the world spreading beauty and knowledge..

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julie September 19, 2015 at 10:21 pm

Thank you, Gail! Your comments means the world to me, as we’ve supported each other through so much of the tough stuff and beautiful times of life. I’m so thankful for your friendship.

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Dee Daud September 19, 2015 at 7:21 pm

Hi Julie. I love this page you have put together. In short it is also about my life. Like you I was trying to hide it for yours, and like you, in the end I started talking about it. Life is so much better when the people around you understand your narcolepsy. Well done mate and all the best.

P.S. I always said you were an Angel, now I can see you with wings! :)

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julie September 19, 2015 at 10:23 pm

Dee, thank you so much for your on-going support in the narcolepsy community. Having fellow advocates like you helping to spread the word to the world makes this journey so much more rewarding and meaningful. We are not alone! Thank you for raising your voice too. Big smiles and many thanks, Julie

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Sharon Cameron September 30, 2015 at 3:41 am

Julie, Thank you for your bravery and optimism which helps people like Me.
I have had my final sleep study to diagnose narcolepsy once and for all and I’m feeling optimism for the first time in 20 years. I have been in the denial stage you spoke about since my 7 year old started school. Other parents ask when I’m returning to work, or why don’t I help out at school more often if I’m not working, or why don’t I just go on that excursion. Oh I just want to concentrate my time with my youngest until he starts school I would say. Well this year he started school and I finally had to start admitting to people the truth about me, because on the outside I look perfectly healthy and normal (I call it my party trick, whenever I’ve had an unscheduled trip to hospital I invariably run into someone I haven’t seen in ages and they tell me how well I’m looking) but now that I’m about to cross this final frontier I have been telling people the truth, My truth, that I have narcolepsy with cataplexy and you know what? The response has not been judgmental or dismissive as I’d feared but supportive and almost congratulatory.
Im calling this my second birthday because for the first time since I was 12 I’m no longer living in fear of doing something different or unscheduled just in case I have one of my moments, I’m embracing it and am about to start my dream job in pets as therapy and instead of being scared, I can’t wait!
Sharon

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Nicole Wilson October 25, 2015 at 1:37 am

Very cool, Julie! I know the fear of telling anyone about why I need to take naps during the day and why I really can’t do activities/meet-ups in the p.m. hours. Thank you for sharing — it is a relief that someone else had the courage to come forward and speak about the truth behind this invisible disorder. I know so many people deal with much more severe health complications, and having to be silent because soooo many people — even basic family health practitioners do not believe there is a real disorder behind narcolepsy. I’d like to hear more about women who want to have families, work, and cannot function without use of medications like Modafinil. I was diagnosed almost 20 years ago (June 17, 1996) and the pregnancy/breast-feeding thing didn’t mean much then, but now it does and there is very little research around this topic. Lots of things I identify with you on and I look forward to reading the book! Thank you much for putting yourself forward for US :-)
Nicole Wilson

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Carrie-Ann Burns March 27, 2016 at 2:18 pm

Congrats, this is absolutely beautiful and a great way to spread awareness and support!

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