I’m Grateful for My Narcolepsy Family
I started attending Wake Up Narcolepsy support groups in the middle of 2020. During this time in my life, I was struggling to imagine a future for myself with this new disease of mine. My type 1 narcolepsy onset happened just a few years prior and wiped my life clean of friends, career advancement, education advancement, and my hope for the future. I felt like I was in a bubble of my own pain, banging on the walls as hard as I could but unable to access the world outside of my new symptoms.
The narcolepsy community supported me and my art business
As I began listening to the similar experiences that other people with narcolepsy have to deal with, I suddenly realized that I was not alone. From difficulties getting medication, to bad reactions from narcolepsy treatment, to interpersonal conflict due to our narcolepsy — we could relate to it all.
My connection with my narcolepsy family formed initially from empathy and understanding. Many people supported my art business, which was my only form of income during this difficult time. I was feeding my service dog bag after bag of dog food purchased from making and selling art. They always believed in me and supported me during this time.
I felt inspired to give back
I am currently living on my own for the first time in a while. The desire to give back to our community inspired me to volunteer my time hosting Wake Up Narcolepsy’s LGBTQIA+ Narcolepsy Support Group. Every week I am inspired by their resilience and grace in tackling their obstacles one by one. I look forward to seeing familiar faces and communicating with different souls.
My support group helped me with my cross-country move
This past week I was shocked by the generosity of our little community. They were aware that I was moving cross-country, and many people checked on me and even offered to help drive me to my new place. After my moving van was stolen this week while I was moving cross-country, I had multiple people from the support group pitch in to help me get a bed by the end of the week.
When I found out that I was getting a new bed delivered, I had a cataplexy attack in my hands until they started shaking uncontrollably. I feel so humbled by this gift from my narcolepsy family, and I hope to be able to pay it forward one day.
I am grateful for my narcolepsy community
It is a relief to know that I am not doing this whole “life” thing alone. Despite being far apart geographically, we are a close-knit community full of caring people that can empathize with our unusual experience of life.
I am grateful for my narcolepsy community and for all they have taught me, and for what they continue to teach me every day. Learning to let myself be loved and cared for has been a struggle, but I feel like I’ve made some incredible progress.
Here’s to my new bed and my lovely community.
How would you describe your relationship with your doctor?