Thursday, December 29, 2011

Accepting and Embracing Narcolepsy

Over the years, I don't know who I struggled harder to gain approval from, employers, friends, family members or myself.  One would think that the answer would be an easy one, but it's not that easy when it comes to hidden illnesses.  Out of sight, out of mind definitely applies to Narcolepsy.  As a society, we expect to be able to see visual proof of anything that is hard to understand.  We have become so dependant on proof that we forget that somethings shouldn't have to be proven.  With all that we have and all that we have accomplished as human beings, we seem to have lost natural compassion.  We judge first, ask questions later.  It's too easy to draw our own conclusions based on what we see and forget to consider the unseen. 

Don't get me wrong, we have evolved over the years.  People with visual disabilities have gained more and more compassion as time goes on but not without a fight.  Why do we have to continuously fight with each other over things that shouldn't matter?  It shouldn't matter if a person can't see, hear or walk and it shouldn't matter if my brain doesn't allow me to naturally sleep.  But apparently it does matter because people with disabilities continue to fight for the freedoms that a "normal" person takes for granted.  And the harder to see the disability, the less likely that anyone will help you. 

But it doesn't have to be this way.  You don't have to be a statistic.  Change starts with you!! Each person that says "No" to discrimination is saying "Yes I will try to understand".   Each person that spreads awareness, spreads understanding, compassion, knowledge and change.  Do you have Narcolepsy?  If you said yes than stop allowing those that don't understand to label you.  Don't spread the hate by hating them back.  Stop and ask yourself why that person is the way they are.  Maybe they too have reason for thinking the way they do.  By labeling them, we become hypocrites. 

We have three options to combat Discrimination.  One is to ignore it.  Don't waste your precious energy on negative energy.  For most of us with Narcolepsy, stress is the number one reason for our symptoms to flare up so find a way to ignore it.  Sometimes that means disassociating yourself from those that don't try to understand you or that put you down due to your condition.  Option number two, combat discrimination with knowledge.  The more you know, the stupider they look.  For example, if someone says, "I don't think Narcolepsy is a real.  I have never met anyone else that claims to have it." You can come back with the comment, "Studies show that Narcolepsy affects one in every 2,000 people.".  By doing this, you don't fuel the hate AND you educate them at the same time.  The third option is raise awareness at every opportunity you can.  The more they know, the less they judge.  Everyday I make it appoint to educate someone on Narcolepsy.  I find a way to bring it up casually in a conversation and drop a little tid bit of information.  It's amazing how many people actually start asking questions and want to learn more.  It's even more surprising when they say, "I wonder if that's what Jane has.  I'll have to let her know".

I recently decided to try to stop blaming others for their ignorance.  I don't think that people intentionally try to be rude and not understand.  They are just as afraid as I am about Narcolepsy but since they don't have to deal with it on an every day basis it's easier for them to ignore it.  When it comes to family members, I try to remember that Narcolepsy is an adjustment for everyone.  It isn't an easy disorder to acknowledge or accept.  Nobody wants to accept that something was wrong with their child and they didn't notice it and I don't think it's uncommon for denial to take place. 

I don't blame my parents for not being diagnosed earlier in life but I might not have always felt that way.  Once I learned how to get past resentment, it allowed me to look at things from their perspective.  How were they to know the difference between "normal teenage behavior" and Narcolepsy?  It's not like children come with an instruction manual and I was their first born.  My symptoms showed up around age 11 and to those closest to me it appeared to just be part of who I was.  No matter where we were going, I was asleep before we left the driveway.  I was born late and never caught up.  I always fell asleep in classes, especially right after lunch.  These are just a few of the things associated with who I am.  So to those around me, it's harder to grasp the concept of Narcolepsy. 

Family members aren't the only ones that have had a hard time grasping the idea of Narcolepsy.  I have lost touch with more friends in my life due to Narcolepsy.  After my managing my full-time job and family, there isn't much time for friends.  I doubt most people that I know would even know that I have Narcolepsy.  It's not exactly a topic brought up at social occasions and when it is, it's more of a mentioning than anything.  Just like family members, my friends tend to associate many of my Narcolepsy symptoms as part of who I am.  I guess, in my strive to gain approval, I tend to use excuses that are easier to understand instead of trying to explain Narcolepsy. 

In the end, the only approval that matters is my own.  By accepting my Narcolepsy and embracing my symptoms and treatments, I can move on to living my life.  I may have struggled throughout my life with Narcolepsy but it is not who I am, it's only a part of who I am.  I have to accept it before others around me will accept it.  I have to embrace it before others will embrace it.  As a wise woman, Julie Flygare, once wrote, "Say it loud and say it proud".  I'm a person with Narcolepsy and I am proud.


  1. I know I'm late to the party seeing how this post in a couple months old(just found your blog through Wake up Narcolepsy), but I wanted to let you know that I love this post.

  2. Lelia: Just reading this post today and love it! (My dad was very ill at the time you wrote it so I apologize I wasn't keeping up with things as well as I should have.) Thank you for quoting me!

    I find it's a constant see-saw between worrying that other don't accept me and reminding myself it doesn't matter what they think. We just gotta keep on moving forward. I'm so glad to share this journey with you. Big smiles, Julie