Two Years Post-Diagnosis: A Redefining


Three weeks ago (September 12th), was the two year anniversary of my narcolepsy diagnosis.  It was a day of celebration, reveling in the beauty of being alive to see another day – narcolepsy or not.  I spent the evening and the next day being thankful for all that I’ve learned through the experience of being diagnosed with something that has the potential to be life changing, and I asked others about their thoughts.  It has been an exercise in reflection, gratitude, and humility to say the least!

The word “change” as I’m learning carries with it a heavy weight that is easy to meet with resistance and hesitation for many.  I’m one of those people.  After all, it takes works to shoulder burdens.  It seems much easier to walk away, to ignore the beacons that are our minds, bodies, and spirits telling us that it is time we adapt.  We can only ignore these internal voices for so long before we must start listening.

This year, I also turned 30, entering a new decade.  When I think of the start of the last decade, my 20’s, I can’t remember much other than the feeling that the horizon was so far away.  I wanted to reach out and touch it, to pull from it the answers behind what journey I was put on Earth to undertake.  Ten years later, I still have little to no idea, yet the last two years have served as a reminder that sometimes the journey is the purpose.  And sometimes the journey we choose isn’t always the right one, or maybe it is for a while before diverging into a different path.  Learning about when to take a different path along the way and having the courage to take it, as I’m finding out, results in what a friend has deemed a “redefining.”

I have changed over the last several years, as have my circumstances.  But much like pumping iron can be healthy and result in strength, so too can embracing the opportunity to redefine ourselves.  Compared with the “me” from even just two years ago, I am stronger, love more deeply, and live with more intent.  I’ve learned that relationships serve an important purpose as the foundation of our support systems in times of need.  Not every relationship is able to be used in that foundation.  We must choose wisely and realize that there are people in our lives whom we expect to be part of that support structure but aren’t for one reason or another.   Every moment we feel awake is a precious gift that should be shared with people who add value to our lives, not those who drain us.

There are other fundamental changes, like learning to redefine success.  My family was rather poor growing up, at least in early childhood years spent with my mother.  The feeling of going to bed hungry because dinner wasn’t plentiful enough to adequately feed six people is something I have experienced more than once.  Many times, we were lucky to have toothbrushes.  We were especially lucky to each have a toothbrush.  Living this way until my father took full custody, coupled with my father’s projections of what success was to him onto me had me convinced in my teenage years and into my 20’s that one couldn’t be very happy unless they had a certain amount of money.   I chose a high-paying career with a lot of growth potential.  I liked it just fine.  I still like it just fine.  Unfortunately, my body just wasn’t cooperating.  I could no longer keep up with both work and my family because all I wanted/needed to do when I got home from work every day was to sleep.

Four months ago, I took the plunge and pressed the pause button on my career to stay home with my daughter.  Each day, I am afforded the opportunity put most of my focus on my family and my health.  The reduction in stress has been directly proportionate to the reduction in pay.  I feel as if each day has more purpose, and it helps to be able to adjust the day’s to-dos based on how my symptoms are in at a given time.  Will this work for everyone?  Absolutely not.  But my husband and I decided that it was worth sacrificing and needing to stick to a budget in order for me to feel well enough to pursue the goals we had for our family.  I’m also looking forward to the years when my child is older and I’m free to explore what it is I’m passionate about.  In some ways, the horizon has gotten even harder to see clearly, yet instead of desperately searching, I hope to enjoy the process instead.

I still hate this disease sometimes, and I’m sure that won’t change, especially since anger is part of the grieving process that I keep cycling through.  For now, I’m learning how to forgive myself for my shortcomings.  I’m learning to let go of all of the times before diagnosis when I was called lazy, depressed, unmotivated and to separate those traits from who I really am.  This process of forgiving is perhaps the most important part of the “redefining” that people with chronic illnesses like narcolepsy must go through.

Out of curiosity, I asked others how they have redefined themselves since diagnosis.  I am thankful to have these strong, supportive people in this community!

“I listen to my inner voice more. I disregard other’s drama. I value my life and energy more than I ever did and no longer allow people in my life that only value me if I have something to give them. I’ve redefined my idea of what successful means. That word no longer has attachment to career and money, but rather attachment to joy, love and hope. Did the day have those qualities? Do I? If I can answer yes, then I’m on the right path.” – Samantha

“I have a gift, an insight into things that many others do not and may not have in this lifetime.  And so do you.  A gift, rather than just a disorder.  And a life still worth living.  Like Samantha, my definitions of how to live life have changed.  My perspective as to what is truly important has changed.  And all for the better.  It truly is love that makes the world go round. I love more.  I cherish more. I slow down more. I create more.   And happiness has settled in where I was certain it could not.” – Laura, diagnosed over 18 years ago.

“I listen to my body more, push myself more and laugh…even more.” – Hilary

Thank you so much, ladies, for sharing your thoughts!

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