The Importance of Awareness and Advocacy
When I first received my diagnosis, I had so many thoughts swirling in my head: “How will this affect me?”, “What will my treatment be?”, and “When will I start to feel better?”. What I didn’t realize was it would not just affect me. I did not realize the struggle I would face when trying to explain my new diagnosis to those around me while I was still learning about it myself.
Accepting and explaining my narcolepsy diagnosis was draining
I was trying to explain to friends and family what this new condition was that some of them had never even heard of. I was trying to explain to doctors what I was feeling when sometimes I couldn’t even find the words. I was trying to do this all while still accepting my diagnosis, beginning treatment, and running low on energy.
As I was scrolling through social media in some of the weeks that followed, I began to learn that there were conferences and events often including doctors and patients. When I learned that there was an upcoming conference just a few hours away, my husband and I decided to make the trip. We were hoping to hear from others that treat or live the reality of the journey I was on.
Attending a narcolepsy conference was a pivotal moment in my journey
Walking into the conference room at a local hotel, I had no idea what a pivotal moment in my journey this would be. Looking back this was the moment I say I "got bit by the advocacy bug.” It was the first time I saw how powerful our stories can be.
Over the next few months I began sharing this new part of my life on social media. I would share the struggles, the things I was overcoming, as well as what narcolepsy actually is — not just the false reality that the media likes to show. Through these stories I began to connect with others who shared my struggles. These conversations not only made me feel like for once I wasn’t alone, but it began to build my self-confidence. I was able to explain my symptoms, experiences and what I was feeling with confidence.
Finding my voice as a narcolepsy advocate — for others and for myself
I began to share more and more to bigger audiences. I had always thought advocacy was more about helping others by raising awareness. However, it works both ways. Using our voices to raise awareness can help others, but it can also help ourselves.
It gave me a confidence I may not have found otherwise. One of the biggest changes I began to see was with my own doctors; at appointments I would struggle to find words and often feel intimidated. After sharing my story, I found a confidence in myself to explain what I was feeling. I was finally able to express the areas I was struggling with and the areas I wanted to work on. It was no longer me listening to the doctor tell me what he wanted to “try,” but a two-way conversation and coming up with possible solutions and ways to get me closer to those solutions. It still took some trial and error, but I finally began to see progress, which was what I had been hoping for.
The confidence to change our lives and the world with narcolepsy advocacy
Advocacy and awareness are important in more ways than I could list. Some are pretty evident: it can allow for better research, it can lead to shorter time to diagnosis or better treatments. But some of the benefits go deeper; it can give us the confidence to speak about our lives with narcolepsy with others. It can give us the security to build a relationship with providers and be able to advocate for our own well-being.
Each voice is important and can add to the impact we can have on the world, not just during Sleep Week and other awareness days, but year-round. With that impact, who knows what changes we could see in the next 5, 10, or even 20 years?
How would you describe your relationship with your doctor?