Let me start by saying, without the online narcolepsy community that I have found, I would not be where I am today. It is amazing that a bunch of people who know nothing more about each other than sharing the same diagnosis can become such huge pillars of support.
The diagnosis of a life-long chronic condition can be a large pill to swallow. It can flip your whole world as you know it upside down, but having a community of people who understand is so important.
The online community supported my diagnosis journey
I went through a rollercoaster of tests and misdiagnoses when I was looking for answers before my narcolepsy diagnosis. If I had not fought for further testing and better specialists, I could still be stuck with no answers.
Do you know what made me fight for answers? Seeing and talking to the amazing, strong advocates that I found online and receiving support from them in a number of ways.
The Instagram narcolepsy community
What started out as a fun social media platform to capture selfies and pictures of my many cafe brunches, quickly became my biggest tool for getting support. There were so many amazing humans who were sharing their stories online, and I started to see that I wasn't alone in my struggle.
I had never considered narcolepsy as a possible cause of my symptoms. I mean, I wasn't falling asleep in my soup like Hollywood had taught me... But after talking to people diagnosed with narcolepsy, I realised that I could relate to a lot of their stories and that Hollywood definitely had not portrayed the full picture!
That is when I starting pushing for further testing and seeking different specialists to look for answers. So I guess you could say that I wouldn't be where I am today without the narcolepsy community on Instagram.
The YouTube narcolepsy community
After Instagram, I decided to delve a little deeper and see what YouTube could bring to the table. I actually stumbled upon Project Sleep on Instagram and found that they had a whole series on YouTube called Rising Voices of Narcolepsy. These videos were so comforting for me because I could listen to stories of people going through diagnosis and coming out the other side. There were stories of overcoming challenges and still living life to the fullest.
I started to have hope that even if I did receive this diagnosis, I could still achieve great things. In fact, with diagnosis came the possibility for treatments that could give me so much of my life back.
Let's support each other
My best advice for anyone feeling alone on their journey, struggling with diagnoses, or seeking answers is to reach out online. Once I found these communities, I started sharing my own story and contributing to the narrative.
I encourage you to take the leap and start talking about your experience because the feeling of community and knowing that you aren't alone can be such a huge support.
What is the hardest part of coping with narcolepsy?