I have loved the idea of being an advocate ever since I understood the meaning of the word. The thought of supporting those that cannot support themselves, creating practical and positive change, and shining light on issues that people are blind to inspires and motivates me.
But advocacy can also seem vague, uncertain, and tiresome. Sometimes I use the word without fully acknowledging all that it encompasses.
Yesterday, I applied for the Rising Voices of Narcolepsy 2018 Program. It is a leadership training program designed by Project Sleep to help people with narcolepsy effectively share their stories with local communities, healthcare providers, news outlets, blogs, and beyond, through writing or public speaking.
Raising awareness and advocacy are not the same thing, but I believe that raising awareness is an important aspect of narcolepsy advocacy. The longer I have had narcolepsy, the more I have become aware of the lack of accurate and comprehensive narcolepsy understanding there is throughout the world.
For the first years diagnosed with narcolepsy, I was afraid to fully acknowledge the ways narcolepsy affected me. I hated the new feelings of limitation, dependence, and lack of control. I felt alone and not ready to consider the need for narcolepsy advocacy.
I feel myself starting to step out and own my narcolepsy in tangible and real ways. I am angry with the lack of workplace accommodations, general misunderstanding, and false assumptions about narcolepsy. It takes too long for people with narcolepsy to get diagnosed, and there is often little support for people with narcolepsy when they finally figure out their diagnosis.
It is daunting to figure out that your well-regulated sleep cycle that you took for granted your entire life is gone. Even though I have been diagnosed with narcolepsy for seven years, I feel like I am still learning new things about narcolepsy all the time. Most people don’t realize that people with narcolepsy actually lack important hypocretins that help sustain alertness and prevent REM sleep from occurring at the wrong times. You often have to act like your own doctor when you have narcolepsy, because there are so few doctors that give you a full understanding of what is going on in your body.
The lack of understanding, awareness, support, and resources offered to those with narcolepsy is not just. I am incredibly grateful for the people that are advocating for narcolepsy awareness and rights. I want to join them and help contribute to the cause. I cannot hide in my own shame and fear. I cannot listen to my inner critic telling me that I am incapable or too limited.
I don’t know what tomorrow brings, but I know that the Lord is stirring these desires in my heart for my good and the good of others. I believe that He is protecting me and keeping me. Although the world is full of trouble, I can take heart because He has overcome the world. No one cares about justice more than my Father in heaven.