A Purpose That Matters
I believe everything in life happens for a reason, particularly those experiences we wish we could avoid.
Advocacy for me is sharing my story, not only to raise awareness but also so that others may be empowered to share theirs.
A life-changing moment
The first time I saw someone on social media talking about their experience living with narcolepsy was 2 years after my diagnosis. It had never occurred to me that listening to other people’s experiences and speaking to people living through the same struggles as me could be so impactful in dealing with my condition.
I was so incredibly shocked and inspired by watching – week after week – people sharing their journeys on Project Sleep’s Facebook through their program called “The Rising Voices of Narcolepsy.” It was a life-changing moment.
During the most difficult time of my life
At this time, I was going through one of the most difficult periods of my life. At the age of 30, I quit my job, moved out of my house, gave my car away, and moved countries to move back in with my mum. This all happened in only 4 days.
I sold everything I owned because I was so incredibly crippled by my treatment that I was almost unrecognizable.
I underwent a very unsettling type of depression that I didn’t (at the time) even recognize as depression. I felt hollow and emotionless for a very long time. It was as though nothing made me sad, or happy, or angry. I felt absolutely nothing at all. It’s something I never want to experience again.
Inspired to write my story
The first story I watched gave me the drive to start writing mine, and eventually, I created a blog which I then shared with the world.
After that, I become so aware that speaking my story out loud generated – for the first time in 2 years – a feeling of taking control of my life through helping others with theirs.
The key to freedom
I choose to believe that some negatives come into your life in order for you to develop the empathy required to drive you to speak up for those who may not yet possess a voice that can be heard.
I see advocacy as being given a key to the cell you have been trapped in for so long and passing this key to someone else who’s trapped before you walk out of the door.
Where I find my advocacy energy
A question many people ask me is how I have the energy to advocate so much.
My reply is that once I stopped focusing on my struggle and focused on helping others with their's, it became something that taught me that I am lucky enough to have such an important purpose in life. Not everyone does.
There are no rules to advocacy
It’s not about the number of hours of work you put in. It’s simply sharing your story with people you come across, even if it’s only one a week...you are an advocate.
The best thing about advocacy is exactly that. There are no rules you need to follow and no schedule you need to obey.
It’s all up to you.
My motivation to keep going
At this very moment, advocating and sharing my story is one of the only things that drive me to keep going and to never give up trying to do the things I always wished I could but believed I couldn't.
I refuse to be someone's inspiration to give up.
How has narcolepsy impacted your ability to work?