The Reality of Advocacy
There are many things I love about being a narcolepsy advocate. When I was first diagnosed with narcolepsy, I took on all of the stigma associated with narcolepsy and internalised it. I didn't want to share my diagnosis with anyone. I felt so alone and ashamed.
After reading others' stories, it helped to break down my own personal stigma and shame. This is what started me on my advocacy journey. I wanted to share my story to help others feel less alone.
What keeps me passionate about being a narcolepsy advocate
This is what I love about being an advocate. I've had many people message me on Instagram telling me how reading my content has helped them. This is what keeps me motivated and what makes me passionate about sharing my reality of living with narcolepsy.
Additionally, another factor that started my advocacy journey was getting frustrated that many people who knew me didn't really know the reality of how this life-changing disorder impacted my life. Therefore, I wanted to share my experiences to help loved ones understand the reality of it!
Advocacy can take a toll physically and emotionally
Advocacy is so important and has so many benefits. However, that doesn't mean that it isn't exhausting. Due to lack of awareness, it means that many of us with narcolepsy have to be at the forefront. It can feel like fighting a never-ending battle as it can feel like we have to do all the fighting.
This can take its toll both physically and emotionally. Particularly when we have a disorder that makes us exhausted!
Sharing our personal stories with the world can be scary
Advocacy often involves sharing our struggles with narcolepsy, which can involve reflecting on these struggles and reflecting on the lack of support out there. This can take a toll on your mental health and can be emotionally exhausting! It can also be scary sharing our personal stories and feelings with the world.
Do I sometimes wish that I didn't have to be an advocate? Absolutely. Advocacy isn't just sharing your story online to help others. You have to be your own advocate in your everyday life.
People don't see the battles we go through
What many don't see behind the scenes is how we are always explaining what narcolepsy is to people and how it affects our lives. To the people we love. To healthcare professionals. The reality is that I'd love to not have to fight to be heard, fight to be understood, and fight to be taken seriously.
Not only that, but people haven't seen the battle we've had to go through to get to the point of sharing our story to help others. Fighting for a diagnosis, fighting for the right treatment, fighting for the right support.
I will continue to share my reality
However, I won't stop. As exhausting as it can be, I won't stop sharing my story and connecting with others. I will continue to share my reality of narcolepsy and continue to try and raise awareness. To break down some of the misconceptions there are around narcolepsy so more people understand what it's truly like.
This way, I hope this will help people with narcolepsy in all aspects, from realising that they have it to diagnosis and treatment.
Being a support for others
Additionally, I will always do it to make people feel less alone. I have found being able to talk to others who understand what I'm going through is so beneficial. It's so nice to feel understood and like someone really does get you. Therefore, by sharing my story online, I hope to be that for others!
It's not easy, but it's worth it.
How important is following a daily routine for managing your narcolepsy?
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